We have been pretending that things are going great. In reality they are. With an underlying monster lurking.
She had her day one chemo and had a pretty rough time but we can do it. The part that makes this part of treatment difficult is the Dexemethezone. I hate that drug. If I have said it before, I apologize but I just hate it. I hate how she it, I hate what I see it do to her body. I hate the disruption in her sleep and her energy fluxuations. I hate the mood swings and the tears and the anger and the frustration. It is hard on all of us. The good news is that it makes her ANC sky rocket. She should be Sushi worthy by the end of the three week period.
I love that she feels she can express all of those things but I want this to be done. She has three more doses this week. One tonight, if I can get her to bed before I fall a sleep, two tomorrow and then we get 7 days off. 14 more doses and we are done with it for this phase. She has some prednisone in maintenance but it could not be worse than this stuff.
I feel like we have both had a bunch of thorns in our feet and we have to get them out. They have starting to work to the surface and fester and we have been able to ignore them but they are there. Slowly they work to the surface and then when it is the most inconvenient, they explode. A bunch of them are just about ready.
We have to get this poison out and out soon.
Sadie update. We did have the invisible fence installed. Sadie is not a great fan but she is also not a glutton for punishment. She has tested the boundary on several occations. She has found that it is consistent. She thinks every now and then that it is gone and will head toward it. Once she went through because I was moving something down the drive way and she received a good strong shock. I am not sure if she would go if there was a squirrel or a cat. She hears dogs walk by and comes into the house and barks at them at the window. She knows that is as close as she can be.
She has also learned that walking happens out the front door and not the back any more. When I say let's go for a walk she heads there. She has also figured out that the collar is the culprit. It is taken off every night and put back on in the morning. She fights me on putting it on but as always, she is a push over for cheese.
I promise to keep you updated better.
Twenty Years, Two Hundred and Forty Months, Seven Thousand Days, and Three Hundred Days. Since we started chasing Leukemia.
Blog Archive
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2005
(250)
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May
(17)
- The Dog is Back
- The Houses Across the Street are Done and For Sale
- Today We Remember the holocaust
- Mother's Day
- Mother's Day Morning
- One more Mile Stone on our Journey
- Dreams of Sand
- Oh dear, another Friday the 13th
- June 17 and 18 2004 Flashback.
- Sadie is good for lots of things.
- A Quiet Week
- THIS DID NOT MAKE MY DAY BUT WE HAVE TO TAKE THIS ...
- The Day Looks Gray but then we know the Sun will E...
- The Crows don't seem to notice much except everything
- GILDA'S HOUSE
- The Last Intense Phase: DAY 1
- I am not sure what day it is.
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May
(17)
Saturday, May 28, 2005
Monday, May 23, 2005
The Last Intense Phase: DAY 1
It was hard to get up this morning. We only accomplished part of the appointments. It is the nature of the beast.
The Plan: 8:15 blood draw,
9:00 a.m. appointment,
10:00 with Child Psyc,
11:00 spinal fluid out, Methotrexate in,
11:30 Vincristine and Doxorubinson IV push. Pick the the scary steroids and head home.
The Reality: 8:45 blood draw
10:00 a.m. put in a room to see Dr. No ANC back so no decision can be made about the Spinal Tap
10:00 miss the Child Psyc appointment
10:20 see Dr.
10: 50 Spinal tap
11:15 Vincristine and Doxorubinson
12:30 home.
Not bad. Bad to miss the Child Psyc appointment. But what do you do. I can beat myself up for trying to get everything done in efficient manner. Or I can just let it go.
I did realize that I have not learned much about the whole system. I should have known better. I should know that there is no way Hem\Onc appointments work right. As far as we have come, we still just don't get it.
We are on the path to maintence. The goal is in sight. I counted the chemo dose until the end of this phase and it goes sort of like this.
28 doses of Dexemethosone
14 doses of Thiuguine
5 doses Vincristine
3 doses Doxorubinson
3 Spinal Tap and Methotrexate
1 dose Cytoxon
8 doses ARC
We can do it. If I can live throught the two weeks of Dexemethosone, I can climb Mount Everest and clean out my basement. It is the worst of them all. It is like being on a roller coaster on speed.
I feel like we are both seniors and only two months left until the final summer before we go to college. Remember that feeling. The anticipation, the anxiety, the excitement and the sheer terror. It is ironic that we have hit this phase as school winds down. We will make it to graduation.
We will be the older, wiser individuals that will calm the nerves of the new parents. The ones that have not realized the hospital binder will not do and you must upgrade. They are the ones that look at our children with dread, and some shielded disgust. Our children have lost their hair and even if some of it has returned, it is not the same. They are secretly thinking they will avoid that fate. They don't know yet that it is the least of their worries and that when it happens it does with such stealth that you only notice when you see an old picture or you see a new parent with a newly diagnosed child.
We have earned our stripes and we will cross the line. We will be different people forever. We will be people that live in a very different way.
I have been too close to knowing the reality of loosing a child. I have had to fight with every fiber of my being from not going over the edge. I have had to look every day at Mrs. Shelley's rocker and know that it could be me. I could be the little old lady with the great smile and the sad heart having lost my only child in a sad way. ( I will tell her tale another time)
M-E is planning that moment of crossing. She wants endless Sushi, and raw bean sprouts, and pre-cut fruit, and store sliced ham. Or as she said the other day, "Mom, I want my freedom back." It is nice we will be able to do that for her.
The Plan: 8:15 blood draw,
9:00 a.m. appointment,
10:00 with Child Psyc,
11:00 spinal fluid out, Methotrexate in,
11:30 Vincristine and Doxorubinson IV push. Pick the the scary steroids and head home.
The Reality: 8:45 blood draw
10:00 a.m. put in a room to see Dr. No ANC back so no decision can be made about the Spinal Tap
10:00 miss the Child Psyc appointment
10:20 see Dr.
10: 50 Spinal tap
11:15 Vincristine and Doxorubinson
12:30 home.
Not bad. Bad to miss the Child Psyc appointment. But what do you do. I can beat myself up for trying to get everything done in efficient manner. Or I can just let it go.
I did realize that I have not learned much about the whole system. I should have known better. I should know that there is no way Hem\Onc appointments work right. As far as we have come, we still just don't get it.
We are on the path to maintence. The goal is in sight. I counted the chemo dose until the end of this phase and it goes sort of like this.
28 doses of Dexemethosone
14 doses of Thiuguine
5 doses Vincristine
3 doses Doxorubinson
3 Spinal Tap and Methotrexate
1 dose Cytoxon
8 doses ARC
We can do it. If I can live throught the two weeks of Dexemethosone, I can climb Mount Everest and clean out my basement. It is the worst of them all. It is like being on a roller coaster on speed.
I feel like we are both seniors and only two months left until the final summer before we go to college. Remember that feeling. The anticipation, the anxiety, the excitement and the sheer terror. It is ironic that we have hit this phase as school winds down. We will make it to graduation.
We will be the older, wiser individuals that will calm the nerves of the new parents. The ones that have not realized the hospital binder will not do and you must upgrade. They are the ones that look at our children with dread, and some shielded disgust. Our children have lost their hair and even if some of it has returned, it is not the same. They are secretly thinking they will avoid that fate. They don't know yet that it is the least of their worries and that when it happens it does with such stealth that you only notice when you see an old picture or you see a new parent with a newly diagnosed child.
We have earned our stripes and we will cross the line. We will be different people forever. We will be people that live in a very different way.
I have been too close to knowing the reality of loosing a child. I have had to fight with every fiber of my being from not going over the edge. I have had to look every day at Mrs. Shelley's rocker and know that it could be me. I could be the little old lady with the great smile and the sad heart having lost my only child in a sad way. ( I will tell her tale another time)
M-E is planning that moment of crossing. She wants endless Sushi, and raw bean sprouts, and pre-cut fruit, and store sliced ham. Or as she said the other day, "Mom, I want my freedom back." It is nice we will be able to do that for her.
Friday, May 20, 2005
GILDA'S HOUSE
I took M-E and Whitney to Gilda's House last night. They attended a focus group for teens to see if they could help set up a program for teens affected by cancer. Kids who have it, have friends with it, or parents and other loves ones.
They came with a ton of ideas. M-E was the only child with cancer. I suggested that she talk to some people at the hospital and get more kids involved. There is a distinct lack of group emotional support during this process. We have lots of support from the staff and some relationships develop from our contact with other parents but no one has the energy to organize anything at the hospital. Unfortunately this is a due to many unavoidable realities. Time and HIPA are the worst offenders.
There are lots of complications and road blocks to having time for something as simple as a group meeting. Having a child with cancer is a full time job. There are appointments, constant vigilance at home, there are extra trips to the hospital due to emergencies, there are meetings with doctors and extra reading, There is a need to spend endless hours reassuring your child it will be "okay" while knowing you might be lieing. The there is the need to attend to your job and simple things like laundry or taking out the garbage. There is the endless issues with payment of bills that never seem to go away and insurance companies and argument over need for certain costs to be covered. There are co-pays and extra co-pays for the one extra pill you gave her by accident or it fell on the floor. It is all very overwhelming. You get used to it after a while and weave it into your life but then so many other parts of your life simply disappear.
You feel desperately alone. Your friends and neighbors and loved ones try to understand but they don't know what to say or do and they begin to retreat when they no longer can count on you. You begin taking the phone off the hook or not returning phone calls. You cann't tell people what you need or even reach out and make a social call. You become more and more isolated because you can not do the things with them that you used to do. There is an outpouring of heartfelt support and then no recipocation or enough thank you notes or even return phone calls. As I sit here today I can think of so many ways I have not been a good friend to those that have helped us so much. We are all human and people need to know they are appreciated and need to have their souls nurtured. They become afraid to call, and they quit asking because there is so much disappointment in all the "No" we can't do that's or the" we have to wait and see". I have stopped planning anything in the future because I so hate to see M-E disappointed when she misses something. We would have loved to see the Lion King but then who could tell if her numbers would be up or is she would be feeling well enough to go ....... .
As humans we are planners, we need to have some certainty in our lives. M-E and I have no certainty and that is our certainty.
What is worse is running into people that have not seen or talked to you for awhile. They have that guilt stricken look on their faces. I see people at the school that intended to do something for us but for very valid and understandable reasons have not. There is not a requirement that to be a good friend they have to deliver a meal or send a card or haul stuff to good will or do some of the weird things my mother think up for people to do. What a waste of good intentions. I wish people would not feel bad. I am certaint that they have done lots of good deeds and we have been well cared for by everyone. It is sort of like the loaves and fishes story. The food was there when it was needed. The universe is in need of great kindness and it provides everything we need when we need it. We have been so blessed with help and our needs met every day that no one should ever feel they have not done something they thought they should have done. Nothing was ever "expected" and everthing was appreciated when it arrived.
Cancer parents simply don't have the time or ability to reach out of the small area that becomes our lives. Sometimes people take that as a rejection. What I have come to realize is that I have to live in this very precise moment. I can not commit to tomorrow or even next week in a meaningful way. Last night I could have called someone and had dinner with them while waiting for M-E. I did not know for sure that I could make it. I had every intention of going but what if M-E needed me to stay, or she was not able to go or the meeting was planned. I too hate to disappoint and impose. I have called several people at different times and they have not been able to do something at that particular time. They feel bad about it and get all worried and stressed. DON'T SWEAT THE SMALL STUFF .
This continues to be a long journey for all of us. Our old lives are quickly fading and have lost their rhythm. We are on a different path than before and excuse my trite statement, we will never be the same again. When we come out of this cave we will not be able to pick up where we were before because we will be in a different part of the universe. We will be able to incorporate many of the elements of our old lives into the new landscape but it will be different but it will be a great life.
They came with a ton of ideas. M-E was the only child with cancer. I suggested that she talk to some people at the hospital and get more kids involved. There is a distinct lack of group emotional support during this process. We have lots of support from the staff and some relationships develop from our contact with other parents but no one has the energy to organize anything at the hospital. Unfortunately this is a due to many unavoidable realities. Time and HIPA are the worst offenders.
There are lots of complications and road blocks to having time for something as simple as a group meeting. Having a child with cancer is a full time job. There are appointments, constant vigilance at home, there are extra trips to the hospital due to emergencies, there are meetings with doctors and extra reading, There is a need to spend endless hours reassuring your child it will be "okay" while knowing you might be lieing. The there is the need to attend to your job and simple things like laundry or taking out the garbage. There is the endless issues with payment of bills that never seem to go away and insurance companies and argument over need for certain costs to be covered. There are co-pays and extra co-pays for the one extra pill you gave her by accident or it fell on the floor. It is all very overwhelming. You get used to it after a while and weave it into your life but then so many other parts of your life simply disappear.
You feel desperately alone. Your friends and neighbors and loved ones try to understand but they don't know what to say or do and they begin to retreat when they no longer can count on you. You begin taking the phone off the hook or not returning phone calls. You cann't tell people what you need or even reach out and make a social call. You become more and more isolated because you can not do the things with them that you used to do. There is an outpouring of heartfelt support and then no recipocation or enough thank you notes or even return phone calls. As I sit here today I can think of so many ways I have not been a good friend to those that have helped us so much. We are all human and people need to know they are appreciated and need to have their souls nurtured. They become afraid to call, and they quit asking because there is so much disappointment in all the "No" we can't do that's or the" we have to wait and see". I have stopped planning anything in the future because I so hate to see M-E disappointed when she misses something. We would have loved to see the Lion King but then who could tell if her numbers would be up or is she would be feeling well enough to go ....... .
As humans we are planners, we need to have some certainty in our lives. M-E and I have no certainty and that is our certainty.
What is worse is running into people that have not seen or talked to you for awhile. They have that guilt stricken look on their faces. I see people at the school that intended to do something for us but for very valid and understandable reasons have not. There is not a requirement that to be a good friend they have to deliver a meal or send a card or haul stuff to good will or do some of the weird things my mother think up for people to do. What a waste of good intentions. I wish people would not feel bad. I am certaint that they have done lots of good deeds and we have been well cared for by everyone. It is sort of like the loaves and fishes story. The food was there when it was needed. The universe is in need of great kindness and it provides everything we need when we need it. We have been so blessed with help and our needs met every day that no one should ever feel they have not done something they thought they should have done. Nothing was ever "expected" and everthing was appreciated when it arrived.
Cancer parents simply don't have the time or ability to reach out of the small area that becomes our lives. Sometimes people take that as a rejection. What I have come to realize is that I have to live in this very precise moment. I can not commit to tomorrow or even next week in a meaningful way. Last night I could have called someone and had dinner with them while waiting for M-E. I did not know for sure that I could make it. I had every intention of going but what if M-E needed me to stay, or she was not able to go or the meeting was planned. I too hate to disappoint and impose. I have called several people at different times and they have not been able to do something at that particular time. They feel bad about it and get all worried and stressed. DON'T SWEAT THE SMALL STUFF .
This continues to be a long journey for all of us. Our old lives are quickly fading and have lost their rhythm. We are on a different path than before and excuse my trite statement, we will never be the same again. When we come out of this cave we will not be able to pick up where we were before because we will be in a different part of the universe. We will be able to incorporate many of the elements of our old lives into the new landscape but it will be different but it will be a great life.
Thursday, May 19, 2005
The Crows don't seem to notice much except everything
They annoy some people but don't seem to care. They are a very important part of our world right now. They go about their lives with an air of annoyance. They are annoyed when a bagel is too hard, they are annoyed when a car drives by when eating a street located morsel, they are annoyed when the squirrels challenge them for the nuts or corn. They spend their life in a constant state of being annoyed.
They have a royal Caw fest when the seagulls show up. They squawk at the cats that are too close to food, water, a nesting tree or just because they can. They have a communication network bar none. But despite their attitude, they seem to go through their lives with ease and let very little bother them. They just have solutions for their challenges and problems.
They can be very amusing. Mom found plaster in the bird bath and was severely reprimanded for taking it out. During the construction period they thought it might be food so they were soaking it. I often watch as special morsels of food are stashed for later. There is a spot in my neighbor's gutter that I observed the crow land with a large piece of bread, very carefully pull up some moss and lay it on the roof, put the bread in the gutter and replace the moss. He does this almost daily. I guess it is the crow's version of a cupboard.
They just get on with meeting life head on with no apologies even though they are annoyed.
I guess we need to be more like them.
They have a royal Caw fest when the seagulls show up. They squawk at the cats that are too close to food, water, a nesting tree or just because they can. They have a communication network bar none. But despite their attitude, they seem to go through their lives with ease and let very little bother them. They just have solutions for their challenges and problems.
They can be very amusing. Mom found plaster in the bird bath and was severely reprimanded for taking it out. During the construction period they thought it might be food so they were soaking it. I often watch as special morsels of food are stashed for later. There is a spot in my neighbor's gutter that I observed the crow land with a large piece of bread, very carefully pull up some moss and lay it on the roof, put the bread in the gutter and replace the moss. He does this almost daily. I guess it is the crow's version of a cupboard.
They just get on with meeting life head on with no apologies even though they are annoyed.
I guess we need to be more like them.
Wednesday, May 18, 2005
The Day Looks Gray but then we know the Sun will Eventually Shine
I knew everything that was in the article printed yesterday. Each and every drug has a list of problems that would make a chain of side affects that circled the world. Each and every drug that is given to treat the side affects has a similar list of side affects. It is an endless cycle. I just hate seeing my worst fears in such a concise litany.
The reality of the situation is that we have no choice. We started down this path, not by choice but we stay on it by choice. We cannot stop once started, we have to keep working toward the end goal. We are going to finish this course of treatment. We will do it with a good attitude and sprinkle it with hope.
It doesn't in any way alieve the deep sadness that I feel about M-E's chances for a long happy life. It makes me so sad because I know what a special person she is and how much she has to offer to everyone and to the world. It is what it is. I have no control over the outcome. I can only be here for her and know that I have done what I could for the best outcome. I know there are no guarantees about anything so that is not the focus. It has to be making the moment count.
Letting God and the universe do what it will. Understanding that we have no control give us more focus on what we can change and affect. We don't need to fight against the roaring sea but go along for a ride.
Now I have to go and take a shower and try and earn my keep because I can do something good in that arena.
The reality of the situation is that we have no choice. We started down this path, not by choice but we stay on it by choice. We cannot stop once started, we have to keep working toward the end goal. We are going to finish this course of treatment. We will do it with a good attitude and sprinkle it with hope.
It doesn't in any way alieve the deep sadness that I feel about M-E's chances for a long happy life. It makes me so sad because I know what a special person she is and how much she has to offer to everyone and to the world. It is what it is. I have no control over the outcome. I can only be here for her and know that I have done what I could for the best outcome. I know there are no guarantees about anything so that is not the focus. It has to be making the moment count.
Letting God and the universe do what it will. Understanding that we have no control give us more focus on what we can change and affect. We don't need to fight against the roaring sea but go along for a ride.
Now I have to go and take a shower and try and earn my keep because I can do something good in that arena.
Tuesday, May 17, 2005
THIS DID NOT MAKE MY DAY BUT WE HAVE TO TAKE THIS CHANCE.
Tuesday, May 17, 2005 - Page updated at 12:00 a.m.
Childhood-cancer survivors often seriously ill later
By The Washington Post and The Associated Press
Two-thirds of children who are cured of cancer in childhood end up with at least one long-term health problem arising from their treatment. One-third have severe complications such as mental retardation, lung damage or congestive heart failure. In all, they are four times as likely to have serious health problems as their siblings.
That is the sobering conclusion of the biggest and most detailed look yet at the long-term health of childhood-cancer survivors. It was presented yesterday at the American Society of Clinical Oncology meeting in Orlando, Fla.
Researchers hope the data, drawn from the experiences of about 10,000 cancer survivors, will offer useful information to doctors treating this ever-growing population. About 75 percent of children treated for cancer survive at least five years, and there are now about 270,000 survivors of childhood cancer in the United States.
"If someone is a survivor of childhood or adolescent cancer, you need to be followed by a doctor who is familiar with the risks, and the vast majority are not," said Kevin Oeffinger, a physician at the University of Texas Southwestern Medical Center in Dallas who led the study.
Cancer treatments have vastly improved in recent years, so today's patients shouldn't suffer as many future problems, specialists say.
Radiation is responsible for much of the damage, and doses were much higher decades ago than they are today, Oeffinger said.
Surgery can be disfiguring, and when done to remove a brain tumor it can cause brain damage. Chemotherapy with a class of drugs called anthracyclines can weaken the heart muscle and cause congestive heart failure. Drugs called alkylating agents can cause sterility.
The new study looked at the experiences of 10,397 survivors older than 18 who had been diagnosed with cancer between 1970 and 1986. They and about 3,000 of their siblings were sent questionnaires about their health. Details of their cancer treatment were collected from the 25 U.S. hospitals and one Canadian hospital.
At the time they were questioned, their average age was 27 and they were an average of 18 years removed from their cancer treatment. Leukemia was the most common cancer (29 percent), followed by Hodgkin's lymphoma (18 percent) and brain tumors (13 percent). Two-thirds had received chemotherapy and just under two-thirds had gotten radiation.
Oeffinger and his colleagues found that by 30 years after treatment, one-third had severe or life-threatening health problems or had died of a disease different from their original cancer. Severe problems included blindness or deafness, disabling breathing problems, congestive heart failure, sterility and amputation.
Life-threatening problems included second cancers, heart attacks, strokes, organ failure requiring transplant, and brain damage so severe that survivors could not function independently.
Some of the deaths were from cancers different from the original ones. Other studies have shown that 20 percent of women who get radiation to the chest in childhood for Hodgkin's lymphoma develop breast cancer by age 45.
The study couldn't prove that later health problems arose from the cancer treatment, but the comparison with siblings indirectly suggests it was a major factor. The survivors were 4.2 times as likely to die or have severe or life-threatening problems as their brothers and sisters.
The researchers believe that if more physicians knew the long-term health risks faced by childhood-cancer survivors, they could intervene in ways that might limit or delay the complications.
Copyright © 2005 The Seattle Times Company
Childhood-cancer survivors often seriously ill later
By The Washington Post and The Associated Press
Two-thirds of children who are cured of cancer in childhood end up with at least one long-term health problem arising from their treatment. One-third have severe complications such as mental retardation, lung damage or congestive heart failure. In all, they are four times as likely to have serious health problems as their siblings.
That is the sobering conclusion of the biggest and most detailed look yet at the long-term health of childhood-cancer survivors. It was presented yesterday at the American Society of Clinical Oncology meeting in Orlando, Fla.
Researchers hope the data, drawn from the experiences of about 10,000 cancer survivors, will offer useful information to doctors treating this ever-growing population. About 75 percent of children treated for cancer survive at least five years, and there are now about 270,000 survivors of childhood cancer in the United States.
"If someone is a survivor of childhood or adolescent cancer, you need to be followed by a doctor who is familiar with the risks, and the vast majority are not," said Kevin Oeffinger, a physician at the University of Texas Southwestern Medical Center in Dallas who led the study.
Cancer treatments have vastly improved in recent years, so today's patients shouldn't suffer as many future problems, specialists say.
Radiation is responsible for much of the damage, and doses were much higher decades ago than they are today, Oeffinger said.
Surgery can be disfiguring, and when done to remove a brain tumor it can cause brain damage. Chemotherapy with a class of drugs called anthracyclines can weaken the heart muscle and cause congestive heart failure. Drugs called alkylating agents can cause sterility.
The new study looked at the experiences of 10,397 survivors older than 18 who had been diagnosed with cancer between 1970 and 1986. They and about 3,000 of their siblings were sent questionnaires about their health. Details of their cancer treatment were collected from the 25 U.S. hospitals and one Canadian hospital.
At the time they were questioned, their average age was 27 and they were an average of 18 years removed from their cancer treatment. Leukemia was the most common cancer (29 percent), followed by Hodgkin's lymphoma (18 percent) and brain tumors (13 percent). Two-thirds had received chemotherapy and just under two-thirds had gotten radiation.
Oeffinger and his colleagues found that by 30 years after treatment, one-third had severe or life-threatening health problems or had died of a disease different from their original cancer. Severe problems included blindness or deafness, disabling breathing problems, congestive heart failure, sterility and amputation.
Life-threatening problems included second cancers, heart attacks, strokes, organ failure requiring transplant, and brain damage so severe that survivors could not function independently.
Some of the deaths were from cancers different from the original ones. Other studies have shown that 20 percent of women who get radiation to the chest in childhood for Hodgkin's lymphoma develop breast cancer by age 45.
The study couldn't prove that later health problems arose from the cancer treatment, but the comparison with siblings indirectly suggests it was a major factor. The survivors were 4.2 times as likely to die or have severe or life-threatening problems as their brothers and sisters.
The researchers believe that if more physicians knew the long-term health risks faced by childhood-cancer survivors, they could intervene in ways that might limit or delay the complications.
Copyright © 2005 The Seattle Times Company
Monday, May 16, 2005
A Quiet Week
A week off is a good thing in one way and a bad thing in another. I thought it would help her to feel good and do some normal things. It had not had that effect, instead she is just dreading going down the chemo road to hell, one more time. Two months, we can do it. Two more months of weekly visits, low counts, nausea, lack of appetite, stress and worry of the chemo kind.
We will make it. We will be able to do what we need to do. We are troopers but more like Patton's Army as it began to run out of supplies as it was heading further and further from home and support. This might be the roughest part of the journey because we know what to expect we have been through this next phase two times before.
We are grateful that we have the chance to get here. Some kids stumble on the way and have to take other paths. We would rather not do that thank-you very much.
Well I am going to try and get her out of bed. Always a big challenge. The house must be prepared for the housekeeper. The dog need a walk and I am out of cream.
All in All it is seeming like our former life and that feels good.
We will make it. We will be able to do what we need to do. We are troopers but more like Patton's Army as it began to run out of supplies as it was heading further and further from home and support. This might be the roughest part of the journey because we know what to expect we have been through this next phase two times before.
We are grateful that we have the chance to get here. Some kids stumble on the way and have to take other paths. We would rather not do that thank-you very much.
Well I am going to try and get her out of bed. Always a big challenge. The house must be prepared for the housekeeper. The dog need a walk and I am out of cream.
All in All it is seeming like our former life and that feels good.
Sunday, May 15, 2005
Sadie is good for lots of things.
She is not a loving dog in the lap dog kind of way. She will sleep by you but be prepared to be visited by her disgruntled vocalizations. She does not like to be disturbed once she is comfortable. She is always surprised when she lands on the floor after such vocalizations.
She is a bit disconcerted at this point in time due to the recent departure of her well trained elder pack members. They feed her and walk her and give her treats with great regularity. I forgot to feed her first thing in the morning yesterday. Dad is calling the SPCA. Oh, well. She survived and let me know that I was letting her down.
She is very attached to ME. She helps her when she is upset. Sadie is her friend and pal. They have shared a lot of their life together. Mary-Elizabeth needs her quiet support right now. She needs to have something or someone to take care of for a while. Sadie knows when you are upset and does what she can to help. M-E needs to look outside of herself for some distraction. Being asked to walk the dog and feed her gets us back to some semblance of normal.
I made Sadie go for a longer walk than usual. I need to get back in shape and by joe Sadie is going also. I had forgotten how nice it is to walk and greet new dogs and become re-aquainted with old ones. There is nothing quit like neighborhood banter. She sniffed and pulled back and tried to bark at the neighbors just to let them know we were around and she was back in charge. It was nice to take that bit of time to see what was new. New plants, yards that are being ignored and then to remember for a few moments what it was like a year ago in the TBD (Time before diagnosis).
Well we are back and Sadie is on the couch. She is pretending to sleep but will be letting us know when any offensive dog is in the yard. Or any cat, or any squirrel or....... She is quite the guard dog and she is doing her job with great alacrity. We are glad that Sadie is back.
She is a bit disconcerted at this point in time due to the recent departure of her well trained elder pack members. They feed her and walk her and give her treats with great regularity. I forgot to feed her first thing in the morning yesterday. Dad is calling the SPCA. Oh, well. She survived and let me know that I was letting her down.
She is very attached to ME. She helps her when she is upset. Sadie is her friend and pal. They have shared a lot of their life together. Mary-Elizabeth needs her quiet support right now. She needs to have something or someone to take care of for a while. Sadie knows when you are upset and does what she can to help. M-E needs to look outside of herself for some distraction. Being asked to walk the dog and feed her gets us back to some semblance of normal.
I made Sadie go for a longer walk than usual. I need to get back in shape and by joe Sadie is going also. I had forgotten how nice it is to walk and greet new dogs and become re-aquainted with old ones. There is nothing quit like neighborhood banter. She sniffed and pulled back and tried to bark at the neighbors just to let them know we were around and she was back in charge. It was nice to take that bit of time to see what was new. New plants, yards that are being ignored and then to remember for a few moments what it was like a year ago in the TBD (Time before diagnosis).
Well we are back and Sadie is on the couch. She is pretending to sleep but will be letting us know when any offensive dog is in the yard. Or any cat, or any squirrel or....... She is quite the guard dog and she is doing her job with great alacrity. We are glad that Sadie is back.
Friday, May 13, 2005
June 17 and 18 2004 Flashback.
Rush to work, rush through the day.
Rush home, we have eye appointments.
Rush to downtown Ballard, say the parking prayer all the way there:
Hail Mary full of Grace Help us find a Parking Space
Rush into the doctor. Wait for an hour. No problems no worries. We are here for a routine, Sally you need more correction on your reading bifocas because you are older than dirt. Then..... off to Thai for dinner.
Those moments of simple innocence before we started down the rabbit hole that has been our life for almost a year.
When "They" say your life can change in a moment an instant, believe them
Dr. Balter did the routine, drops, wait, look. He checked me out, no problems. Mary-Elizabeth was the next one to be seen. He did a brief scan then looked into her eyes. He pulled back and looked again and then he said. "I see a problem." It was a quiet sobering comment. I took a deep breath and asked what? He explained that he could see a visible swelling of her optic nerves. In both eyes. He immediately took her blood pressure and ruled out a problem there. He said she need to be seen by her family doctor and another specialist. He talked with our doctors and send us to Retinal Eye Specialist. Both appointments were made in rapid succession.
Thursday night was very tense. I called my dad and my sister. I called Johnny. We all were a bit worried but knew that we had lots of information to gather. We were up early and then Friday the 18th. We went to blood draws and then to breakfast at the Atlas. Back to the doctor. He could find nothing that would be a problem. Blood sugar was normal, everything was normal. The blood work looked good and there were no symptoms of anything. No head aches, not nausea, nothing.
On to the Retinal Specialist. He took pictures of the back of her eyes. He took one look and then pulled back and said: "I don't think she has a brain tumor." It might Pseudo Tumor Ceribir. Most likely, her head just thinks she had a tumor. Oh great, those are the most comforting word a mother can hear.
He made an appointment with Dr. a NeuroOpthomologist. 11:00 am on Monday morning. Wonderful, I get to worry about this all week-end.
8:30 p.m. Friday night the phone rings. "Sally, this is Scot Makintire. How did your appointment go......" Somehow a phone call from your Primary Physician late Friday night. A progress report was given and then we fretted.
Rush home, we have eye appointments.
Rush to downtown Ballard, say the parking prayer all the way there:
Hail Mary full of Grace Help us find a Parking Space
Rush into the doctor. Wait for an hour. No problems no worries. We are here for a routine, Sally you need more correction on your reading bifocas because you are older than dirt. Then..... off to Thai for dinner.
Those moments of simple innocence before we started down the rabbit hole that has been our life for almost a year.
When "They" say your life can change in a moment an instant, believe them
Dr. Balter did the routine, drops, wait, look. He checked me out, no problems. Mary-Elizabeth was the next one to be seen. He did a brief scan then looked into her eyes. He pulled back and looked again and then he said. "I see a problem." It was a quiet sobering comment. I took a deep breath and asked what? He explained that he could see a visible swelling of her optic nerves. In both eyes. He immediately took her blood pressure and ruled out a problem there. He said she need to be seen by her family doctor and another specialist. He talked with our doctors and send us to Retinal Eye Specialist. Both appointments were made in rapid succession.
Thursday night was very tense. I called my dad and my sister. I called Johnny. We all were a bit worried but knew that we had lots of information to gather. We were up early and then Friday the 18th. We went to blood draws and then to breakfast at the Atlas. Back to the doctor. He could find nothing that would be a problem. Blood sugar was normal, everything was normal. The blood work looked good and there were no symptoms of anything. No head aches, not nausea, nothing.
On to the Retinal Specialist. He took pictures of the back of her eyes. He took one look and then pulled back and said: "I don't think she has a brain tumor." It might Pseudo Tumor Ceribir. Most likely, her head just thinks she had a tumor. Oh great, those are the most comforting word a mother can hear.
He made an appointment with Dr. a NeuroOpthomologist. 11:00 am on Monday morning. Wonderful, I get to worry about this all week-end.
8:30 p.m. Friday night the phone rings. "Sally, this is Scot Makintire. How did your appointment go......" Somehow a phone call from your Primary Physician late Friday night. A progress report was given and then we fretted.
Oh dear, another Friday the 13th
Here we are 9 months. This is the first Friday the 13th that we have had since last August. I am trying to ignore it but there is this underlying rumble in my head. Friday the 13th....... Friday the 13th............................
9 Months. We simply continue in our new lives. Each moment that passes is a moment further into the world of remission. Remission, I have decided that I don't like that word. Remission means that the cancer is gone but......... there is no way to know if it is going to come back. Remission is a word that we all crave at the beginning but now I want to hear the word "Cure". It will not be in our vocabulary for a very very long time.
I was wasting my time on Second Life last night and M-E came out of the bedroom and was crying. She had had a nightmare about the cancer returning. I hugged her and did what I could to tell her it would be alright. Hugs are good things.
She is a fighter and no matter how far down she falls, she fights back to reestablish her life. She is like one of those bouncy clowns that you can hit and hit and they come back upright just like nothing is wrong. At least on the outside.
We have a week of no appointments coming up. It is going to be nice to not spend time at the hospital. I am looking forward to the time we are free from our town arrest for a whole month. I am just like a kid the week before Christmas. I can see the decorations going up but I still have more school to attend and other things to do before the real date. If everything goes as planned, We will be done the last of July. This will be the first summer I have wanted to go quickly.
M-E asked for an Invisible Fence for her birthday for Sadie. We are having it installed. They came out early this week to have a look at the yard and make the plan. Yesterday they came back to "train" Sadie. It won't take much training. First she snapped at the nice lady as she tried to put the collar of torture on her. Sadie was then given little bits of cheese until she was within range of the cattle prod( signal emmiter). She received the warning signal, ignored it and was "bitten" by the collar. She ran and climbed on the couch and would not go on to the rug for a very long time. She would not go back to the nice lady for any amount of cheese.
The Fence is to be installed on the 24th. Check in for updates on the progress. Does anyone know the name of a good Pet psychiatrist?
The houses across the street are both sold but to my mother's delight, the workman keep coming. the new neighbor's will keep her occupied for a long time. I don't know who enjoys the front window's more, Sadie or Mom.
Dear God, please make this Friday the 13th less eventful than the last.
9 Months. We simply continue in our new lives. Each moment that passes is a moment further into the world of remission. Remission, I have decided that I don't like that word. Remission means that the cancer is gone but......... there is no way to know if it is going to come back. Remission is a word that we all crave at the beginning but now I want to hear the word "Cure". It will not be in our vocabulary for a very very long time.
I was wasting my time on Second Life last night and M-E came out of the bedroom and was crying. She had had a nightmare about the cancer returning. I hugged her and did what I could to tell her it would be alright. Hugs are good things.
She is a fighter and no matter how far down she falls, she fights back to reestablish her life. She is like one of those bouncy clowns that you can hit and hit and they come back upright just like nothing is wrong. At least on the outside.
We have a week of no appointments coming up. It is going to be nice to not spend time at the hospital. I am looking forward to the time we are free from our town arrest for a whole month. I am just like a kid the week before Christmas. I can see the decorations going up but I still have more school to attend and other things to do before the real date. If everything goes as planned, We will be done the last of July. This will be the first summer I have wanted to go quickly.
M-E asked for an Invisible Fence for her birthday for Sadie. We are having it installed. They came out early this week to have a look at the yard and make the plan. Yesterday they came back to "train" Sadie. It won't take much training. First she snapped at the nice lady as she tried to put the collar of torture on her. Sadie was then given little bits of cheese until she was within range of the cattle prod( signal emmiter). She received the warning signal, ignored it and was "bitten" by the collar. She ran and climbed on the couch and would not go on to the rug for a very long time. She would not go back to the nice lady for any amount of cheese.
The Fence is to be installed on the 24th. Check in for updates on the progress. Does anyone know the name of a good Pet psychiatrist?
The houses across the street are both sold but to my mother's delight, the workman keep coming. the new neighbor's will keep her occupied for a long time. I don't know who enjoys the front window's more, Sadie or Mom.
Dear God, please make this Friday the 13th less eventful than the last.
Wednesday, May 11, 2005
Dreams of Sand
I was in a world of people and water. We were traveling together to a party. We were separated and I could not find my friends and family. I began to realize that all the water was turning to sand and the land was turning to sand and then big holes began to appear and every thing was getting swallowed up. No one seemed to notice but me.
Do you think I need therapy or a Dream Journal.
Do you think I need therapy or a Dream Journal.
Monday, May 09, 2005
One more Mile Stone on our Journey
She is going to sleep. Much needed sleep. She had a very rough night last night. She was worried about the Methotrexate. I could not aleive her fears and her anticipation. I could not tell her she would be alright. I could not make the bad thoughts go away. I could not make it better. She had too much knowledge. She knew that any reassurance I gave her was really a lie.
630 ml of Methotrexate have been injected. Now we wait. Days of nausea f0llowed by days of bone deep weariness. Then we are done with the drug in IV form. I told her as the IV pump began today, that this was the last dose. She smiled and we both knew I might be lying.
It is the last dose IV if...... if she does not relapse.
Each day that we progress through this process we put one small step between ourselves and the cancer. We count a moment in time that we are deemed to be cancer free. Each blood test is a way to know that the cancer is still gone, we hope.
She does not know what if feels like to have cancer because she never was sick, not in the way most kids are sick. She never had the weeks of lethargy or the lingering cold, she did not have the strange spots or the weird blood tests. She went for a normal eye exam. She went to confirm for the third time that she received her dad's eyes and not her mom's. We will all be more wary than most. I will always hover more than I used to hover. I will worry more and watch more.
For now we know that the last dose has been given. M-E is sleeping. How can this not be a wonderful moment in time?
630 ml of Methotrexate have been injected. Now we wait. Days of nausea f0llowed by days of bone deep weariness. Then we are done with the drug in IV form. I told her as the IV pump began today, that this was the last dose. She smiled and we both knew I might be lying.
It is the last dose IV if...... if she does not relapse.
Each day that we progress through this process we put one small step between ourselves and the cancer. We count a moment in time that we are deemed to be cancer free. Each blood test is a way to know that the cancer is still gone, we hope.
She does not know what if feels like to have cancer because she never was sick, not in the way most kids are sick. She never had the weeks of lethargy or the lingering cold, she did not have the strange spots or the weird blood tests. She went for a normal eye exam. She went to confirm for the third time that she received her dad's eyes and not her mom's. We will all be more wary than most. I will always hover more than I used to hover. I will worry more and watch more.
For now we know that the last dose has been given. M-E is sleeping. How can this not be a wonderful moment in time?
Sunday, May 08, 2005
Mother's Day Morning
The Paper is here, No good sales. We need a new BBQ and they go on sale for Father's Day. Mom and I think that is just wrong. We will wait. No one has called yet for Mom. She knows they will.
Quiet is our plan. I figure it is Mother's Day and I get to do what I want. I will start planting and digging up the things I should never have planted I can then compost them they don't have to be saved or moved or recycled. I can have cold pizza for breakfast and take Sadie for a walk of my choosing and not hers. I can do laundry and not fold it. I can put any sheets I want on my bed or even better buy some crazy colors at Macys, colors that are bright and fun. I can drink coffee that is too strong. I can spend lots of time on Second Life or sew in only colors that I like. I can take a long shower and waste lots of water. I can take some time to read my new books. I can order some more if I have not finished the ones I have started. I can make the list longer for the handy man. I can plan the Invisible Fence for the yard. ( M-E wants one for Sadie. It is M-E's birthday present.) I can read only the sections of the paper that are mindless. I am going on the "no news is good news" theory. I can put out all the snail bait I want. I can look on E-Bay for Venice stuff as long until I have had my fill. I can watch movies of no import with Mary-E and try and help her ready for her last dose of Methotrexate. I can have no expectations of what the day will bring.
I will do what I want and know that I have everything I need, or desire because I am a Mom and this is my day to relish how wonderful Mom-ness is. For today, it means I can do Anything!!!!!!!!!!!! I Want.
Quiet is our plan. I figure it is Mother's Day and I get to do what I want. I will start planting and digging up the things I should never have planted I can then compost them they don't have to be saved or moved or recycled. I can have cold pizza for breakfast and take Sadie for a walk of my choosing and not hers. I can do laundry and not fold it. I can put any sheets I want on my bed or even better buy some crazy colors at Macys, colors that are bright and fun. I can drink coffee that is too strong. I can spend lots of time on Second Life or sew in only colors that I like. I can take a long shower and waste lots of water. I can take some time to read my new books. I can order some more if I have not finished the ones I have started. I can make the list longer for the handy man. I can plan the Invisible Fence for the yard. ( M-E wants one for Sadie. It is M-E's birthday present.) I can read only the sections of the paper that are mindless. I am going on the "no news is good news" theory. I can put out all the snail bait I want. I can look on E-Bay for Venice stuff as long until I have had my fill. I can watch movies of no import with Mary-E and try and help her ready for her last dose of Methotrexate. I can have no expectations of what the day will bring.
I will do what I want and know that I have everything I need, or desire because I am a Mom and this is my day to relish how wonderful Mom-ness is. For today, it means I can do Anything!!!!!!!!!!!! I Want.
Saturday, May 07, 2005
Mother's Day
Here we are Mother's Day. Mom is here and we went to dinner last night. It was great. Father was not happy but paid the bill. Mom made her order wine and we had two PuPu platters. Oh well. It was for Mother's Day. We sent him home on the train this morning. I took a bit of time and when to Flower World and picked up a quilt and stopped at the fabric store. It was a successful adventure.
We are not doing brunch or anything tomorrow. Planting flowers and just relaxing.
I never realized how much I was a "Mother" and how important it was to me until this assault on my baby. I guess I took the roll for granted. I was surprised by motherhood but have always loved it more than any other role I have had to play. It fits me like a glove. I don't think I would ever survive loosing the part. I am looking forward to playing the part for many years to come.
ME is working on trying to get the Hobbit loaded on the IPOD. I am amazed at her abilities to work on computers. I am catching up. You will know I hav arrived when a picture appears on this page. It might be a long time.
We are not doing brunch or anything tomorrow. Planting flowers and just relaxing.
I never realized how much I was a "Mother" and how important it was to me until this assault on my baby. I guess I took the roll for granted. I was surprised by motherhood but have always loved it more than any other role I have had to play. It fits me like a glove. I don't think I would ever survive loosing the part. I am looking forward to playing the part for many years to come.
ME is working on trying to get the Hobbit loaded on the IPOD. I am amazed at her abilities to work on computers. I am catching up. You will know I hav arrived when a picture appears on this page. It might be a long time.
Thursday, May 05, 2005
Today We Remember the holocaust
I was listening to NPR and today is the day of remembrance. It made me think about how horrible the life was during the time that people lived in the camps. They were all affected by the events but were able to go on after the fact and were able to make good lives for themselves.
The human spirit is such a strong entity. I don't know what else to call it . I see it working in the children in M-E's class. I see it at the hospital. I see it in her. I see her sit and be. I see her struggle with small things and I see her doubt herself. She has been let down by her body at a very young age. But I see the spirit. The deep deep strength that shines through. I have to just know it will carry her through this time of holocaust and we will emerge on the other side. It will take time and there will be days of remembrance but her spirit will not be silenced.
She is going to CYO camp in celebration of the beginning of maintence. She is returning to Camp Hamilton and will be with Whitney. She is so excited to be able to return. They will not be doing horses but will be able to enjoy the other activities. It it scheduled for the 14th of August to the 20th. Those were the days we first began this process. I think it is important to replace bad memories with good ones.
We will remember this time with great wonder. We will remember the good and the bad. But the most of all we will remember. We must always remember so we don't forget to count our blessings and know that we can be survivors, true survivors.
Remember.......................
The human spirit is such a strong entity. I don't know what else to call it . I see it working in the children in M-E's class. I see it at the hospital. I see it in her. I see her sit and be. I see her struggle with small things and I see her doubt herself. She has been let down by her body at a very young age. But I see the spirit. The deep deep strength that shines through. I have to just know it will carry her through this time of holocaust and we will emerge on the other side. It will take time and there will be days of remembrance but her spirit will not be silenced.
She is going to CYO camp in celebration of the beginning of maintence. She is returning to Camp Hamilton and will be with Whitney. She is so excited to be able to return. They will not be doing horses but will be able to enjoy the other activities. It it scheduled for the 14th of August to the 20th. Those were the days we first began this process. I think it is important to replace bad memories with good ones.
We will remember this time with great wonder. We will remember the good and the bad. But the most of all we will remember. We must always remember so we don't forget to count our blessings and know that we can be survivors, true survivors.
Remember.......................
Tuesday, May 03, 2005
The Houses Across the Street are Done and For Sale
$429,995.00 What more can I say. One went on the market on Friday and has been sold subject to inspection. We shall see. The second one will be ready this week-end.
1250 square feet, 2500 square foot lot.
I guess the attraction is that they live across the street from me. I guess they don't know that Sadie barks very early in the morning. Boy will they be surprised.
1250 square feet, 2500 square foot lot.
I guess the attraction is that they live across the street from me. I guess they don't know that Sadie barks very early in the morning. Boy will they be surprised.
The Dog is Back
Well Sadie is back. She has come back with Mom and Dad for a bit. Maybe more than a bit. She is a bit noisy. She is chasing the cat and barking at everything. She is a noisy little thing. Mom is here for a few days with dad. He is going home on the train. He is coming back next Friday.
Mary-Elizabeth is doing okay right now. She is going to school and doing fine. She is tired and very grumpy but it helps a lot to say that we only have one more dose of Methotrexate.
Three more months. That is the chant. Three more months.
Mary-Elizabeth is doing okay right now. She is going to school and doing fine. She is tired and very grumpy but it helps a lot to say that we only have one more dose of Methotrexate.
Three more months. That is the chant. Three more months.
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