M-E is going to take the plunge and be 13. We sent an E-Vite but then I am not very good at all of that. We are having a party from noon to 4 ish on the 4th. Come eat and relax and chat and enjoy the beginning of a great year.
We are setting up the grill and food and drinks will be here with cake of course. If you are so inclined bring something to drink or some favorite summer dish. Nothing is expected just a gathering of good friends.
Tuesday, June 28, 2005
Nity Gritty on our favorite Drug.
WE HAVE FINISHED THE LAST DOSE OF THIS FORM OF POISEN. As I read this, I am beginning to wonder why we gave it to her.
Brand name:
Cytoxan
Pronounced: sigh-TOKS-an Generic name: Cyclophosphamide
Why is this drug prescribed?
Return to top
Cytoxan, an anticancer drug, works by interfering with the growth of malignant cells. It may be used alone but is often given with other anticancer medications.
Cytoxan is used in the treatment of the following types of cancer: Breast cancer Leukemias (cancers affecting the white blood cells) Malignant lymphomas (Hodgkin's disease or cancer of the lymph nodes) Multiple myeloma (a malignant condition or cancer of the plasma cells) Advanced mycosis fungoides (cancer of the skin and lymph nodes) Neuroblastoma (a malignant tumor of the adrenal gland or sympathetic nervous system) Ovarian cancer (adenocarcinoma) Retinoblastoma (a malignant tumor of the retina)
In addition, Cytoxan may sometimes be given to children who have "minimal change" nephrotic syndrome (kidney damage resulting in loss of protein in the urine) and who have not responded well to treatment with steroid medications.
Most important fact about this drug
Return to top
Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder.
While you are being treated with Cytoxan, drink 3 or 4 liters of fluid a day to help prevent bladder problems. The extra fluid will dilute your urine and make you urinate frequently, thus minimizing the Cytoxan byproducts' contact with your bladder.
How should you take this medication?
Return to top
Take Cytoxan exactly as prescribed. You will undergo frequent blood tests, and the doctor will adjust your dosage depending on your white blood cell count; a dosage reduction is necessary if the count drops below a certain level. You will also have frequent urine tests to check for blood in the urine, a sign of bladder damage.
Take Cytoxan on an empty stomach. If you have severe stomach upset, then you may take it with food.
If you are unable to swallow the tablet form, you may be given an oral solution made from the injectable form of Cytoxan and Aromatic Elixir. This solution should be used within 14 days.
---If you miss a dose...
Do not take the dose you missed. Go back to your regular schedule and contact your doctor. Do not take 2 doses at once.
---Storage instructions...
Store tablets at room temperature. Store the oral solution in the refrigerator.
What side effects may occur?
Return to top
Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor immediately. Only your doctor can determine if it is safe for you to continue using Cytoxan.
One possible Cytoxan side effect is the development of a secondary cancer, typically of the bladder, lymph nodes, or bone marrow. A secondary cancer may occur up to several years after the drug is given.
Cytoxan can lower the activity of your immune system, making you more vulnerable to infection.
Noncancerous bladder problems may occur during Cytoxan therapy (see "Most important fact about this drug" section, above).
More common side effects may include: Loss of appetite, nausea and vomiting, temporary hair loss
Less common or rare side effects may include: Abdominal pain, anemia, bleeding, darkening of the skin and changes in fingernails, decreased sperm count, diarrhea, fever, infections, infertility, lung infections, missed menstrual periods, mouth sores, new tumor growth, other cancers, rash, severe allergic reaction, slow wound healing, yellowing of eyes and skin
Why should this drug not be prescribed?
Return to top
Do not take this medication if you have ever had an allergic reaction to it.
Also, tell your doctor if you have ever had an allergic reaction to another anticancer drug such as Alkeran, CeeNU, Emcyt, Leukeran, Myleran, or Zanosar.
In adults, Cytoxan should not be given for "minimal change" nephrotic syndrome or any other kidney disease.
Also, Cytoxan should not be given to anyone who is unable to produce normal blood cells because the bone marrow---where blood cells are made---is not functioning well.
Special warnings about this medication
Return to top
You are at increased risk for toxic side effects from Cytoxan if you have any of the following conditions: Blood disorder (low white blood cell or platelet count) Bone marrow tumors Kidney disorder Liver disorder Past anticancer therapy Past X-ray therapy
Possible food and drug interactions when taking this medication
Return to top
If Cytoxan is taken with certain other drugs, the effects of either could be increased, decreased, or altered. It is especially important to check with your doctor before combining Cytoxan with the following: Anticancer drugs such as Adriamycin Allopurinol (the gout medicine Zyloprim) Phenobarbital
If you take adrenal steroid hormones because you have had your adrenal glands removed, you are at increased risk for toxic effects from Cytoxan; your dosage of both the steroids and Cytoxan may need to be modified.
Special information if you are pregnant or breastfeeding
Return to top
If you are pregnant or plan to become pregnant, inform your doctor immediately. When taken during pregnancy, Cytoxan can cause defects in the unborn baby. Women taking Cytoxan should use effective contraception. Cytoxan does appear in breast milk. A new mother will need to choose between taking this drug and nursing her baby.
Recommended dosage
Return to top
ADULTS AND CHILDREN
Malignant Diseases Your doctor will tailor your dosage according to your condition and other drugs taken with Cytoxan.
The recommended oral dosage range is 1 to 5 milligrams per 2.2 pounds of body weight per day.
CHILDREN
"Minimal Change" Nephrotic Syndrome The recommended oral dosage is 2.5 to 3 milligrams per 2.2 pounds of body weight per day for a period of 60 to 90 days.
Overdosage
Return to top
Although there is no specific information on Cytoxan overdose, any medication taken in excess can have serious consequences. If you suspect an overdose of Cytoxan, seek medical attention immediately.
Brand name:
Cytoxan
Pronounced: sigh-TOKS-an Generic name: Cyclophosphamide
Why is this drug prescribed?
Return to top
Cytoxan, an anticancer drug, works by interfering with the growth of malignant cells. It may be used alone but is often given with other anticancer medications.
Cytoxan is used in the treatment of the following types of cancer: Breast cancer Leukemias (cancers affecting the white blood cells) Malignant lymphomas (Hodgkin's disease or cancer of the lymph nodes) Multiple myeloma (a malignant condition or cancer of the plasma cells) Advanced mycosis fungoides (cancer of the skin and lymph nodes) Neuroblastoma (a malignant tumor of the adrenal gland or sympathetic nervous system) Ovarian cancer (adenocarcinoma) Retinoblastoma (a malignant tumor of the retina)
In addition, Cytoxan may sometimes be given to children who have "minimal change" nephrotic syndrome (kidney damage resulting in loss of protein in the urine) and who have not responded well to treatment with steroid medications.
Most important fact about this drug
Return to top
Cytoxan may cause bladder damage, probably from toxic byproducts of the drug that are excreted in the urine. Potential problems include bladder infection with bleeding and fibrosis of the bladder.
While you are being treated with Cytoxan, drink 3 or 4 liters of fluid a day to help prevent bladder problems. The extra fluid will dilute your urine and make you urinate frequently, thus minimizing the Cytoxan byproducts' contact with your bladder.
How should you take this medication?
Return to top
Take Cytoxan exactly as prescribed. You will undergo frequent blood tests, and the doctor will adjust your dosage depending on your white blood cell count; a dosage reduction is necessary if the count drops below a certain level. You will also have frequent urine tests to check for blood in the urine, a sign of bladder damage.
Take Cytoxan on an empty stomach. If you have severe stomach upset, then you may take it with food.
If you are unable to swallow the tablet form, you may be given an oral solution made from the injectable form of Cytoxan and Aromatic Elixir. This solution should be used within 14 days.
---If you miss a dose...
Do not take the dose you missed. Go back to your regular schedule and contact your doctor. Do not take 2 doses at once.
---Storage instructions...
Store tablets at room temperature. Store the oral solution in the refrigerator.
What side effects may occur?
Return to top
Side effects cannot be anticipated. If any develop or change in intensity, inform your doctor immediately. Only your doctor can determine if it is safe for you to continue using Cytoxan.
One possible Cytoxan side effect is the development of a secondary cancer, typically of the bladder, lymph nodes, or bone marrow. A secondary cancer may occur up to several years after the drug is given.
Cytoxan can lower the activity of your immune system, making you more vulnerable to infection.
Noncancerous bladder problems may occur during Cytoxan therapy (see "Most important fact about this drug" section, above).
More common side effects may include: Loss of appetite, nausea and vomiting, temporary hair loss
Less common or rare side effects may include: Abdominal pain, anemia, bleeding, darkening of the skin and changes in fingernails, decreased sperm count, diarrhea, fever, infections, infertility, lung infections, missed menstrual periods, mouth sores, new tumor growth, other cancers, rash, severe allergic reaction, slow wound healing, yellowing of eyes and skin
Why should this drug not be prescribed?
Return to top
Do not take this medication if you have ever had an allergic reaction to it.
Also, tell your doctor if you have ever had an allergic reaction to another anticancer drug such as Alkeran, CeeNU, Emcyt, Leukeran, Myleran, or Zanosar.
In adults, Cytoxan should not be given for "minimal change" nephrotic syndrome or any other kidney disease.
Also, Cytoxan should not be given to anyone who is unable to produce normal blood cells because the bone marrow---where blood cells are made---is not functioning well.
Special warnings about this medication
Return to top
You are at increased risk for toxic side effects from Cytoxan if you have any of the following conditions: Blood disorder (low white blood cell or platelet count) Bone marrow tumors Kidney disorder Liver disorder Past anticancer therapy Past X-ray therapy
Possible food and drug interactions when taking this medication
Return to top
If Cytoxan is taken with certain other drugs, the effects of either could be increased, decreased, or altered. It is especially important to check with your doctor before combining Cytoxan with the following: Anticancer drugs such as Adriamycin Allopurinol (the gout medicine Zyloprim) Phenobarbital
If you take adrenal steroid hormones because you have had your adrenal glands removed, you are at increased risk for toxic effects from Cytoxan; your dosage of both the steroids and Cytoxan may need to be modified.
Special information if you are pregnant or breastfeeding
Return to top
If you are pregnant or plan to become pregnant, inform your doctor immediately. When taken during pregnancy, Cytoxan can cause defects in the unborn baby. Women taking Cytoxan should use effective contraception. Cytoxan does appear in breast milk. A new mother will need to choose between taking this drug and nursing her baby.
Recommended dosage
Return to top
ADULTS AND CHILDREN
Malignant Diseases Your doctor will tailor your dosage according to your condition and other drugs taken with Cytoxan.
The recommended oral dosage range is 1 to 5 milligrams per 2.2 pounds of body weight per day.
CHILDREN
"Minimal Change" Nephrotic Syndrome The recommended oral dosage is 2.5 to 3 milligrams per 2.2 pounds of body weight per day for a period of 60 to 90 days.
Overdosage
Return to top
Although there is no specific information on Cytoxan overdose, any medication taken in excess can have serious consequences. If you suspect an overdose of Cytoxan, seek medical attention immediately.
We have begun the last Phase.
Great numbers 4400. We were a go for Cytoxon. Admitted at 5:00 p.m. Fluids until 8:00 p.m. Zofran, Ara-C
8:30 p.m. Cytoxon
9:30 p.m Lasix
12:30 a.m. Much needed sleep.
8:30 a.m Zofran
9:00 am. Ara-C
11:00 Spinal Tap Methrexate
2:30 p.m. Home in bed, sleeping.
What a relief. No matter how bad her number are, we keep going.
As the cytoxon dripped, her color and vitality waned. I know it will come back. We have been here before, we will not be here again. That is my prayer.
Two weeks of oral chemo, 6 more doses of Ara-C and then we wait for tranfusions to begin and that is okay. We are so far in this process.
I will try to work a bit. Celebrate a bit and pray more than ever. Our "R" word for the day is RECOVERY.
Monday, June 27, 2005
We hope WE start
We hope to start today.
That is all I have to say.
We go we wait and we pray.
Oh, maybe I will be a poet some day.
How does that sound, let's go out and play.
I logged in to add pictures because I can.
Sunday, June 26, 2005
A week has passed
We are in the same spot today as a week-ago. Tomorrow we begin day 28, we hope. Once we start, we are on our way to the end. It is getting the"go" part of if that is hard. M-E is in a funky place. Jerry was not able to come yesterday and she was so looking forward to getting rid of her hair. It hurts right now as it falls out. It is everywhere, I found some in the dog and cat's water. Bits of M-E. This is the last time.
She will go to the hospital bald tomorrow. It is a sign that she is progressing in the treatment. The drugs are doing their job.
We are ready. Bags packed. Mom will be here today. Johnny is making salsa. The world is in a good place.
Thursday, June 23, 2005
Going, Going, Gone............................................
The hair is leaving again. Really really leaving again. But I think hair serves a very different purpose than we all think.
It was here at the beginning when I wanted to think that my child would not look like those other children. How could all that hair, hair that has never been off her head, leave. I had never seen her bare scalp. It is one of the white lies that I let myself believe. I didn't want to be shallow and it took a couple of days to even ask the question: "Will her hair really fall out?" They keep talking about how chemo therapy kills rapidly dividing cells. When the question was finally asked, the answer was "Yes. Yes, hair is a rapidly dividing cells".
My desire to cling to the long beautiful healthy locks only lasted about 5 days. And then M-E had a new room mate and we all looked at her and then there was a consensus that all the hair was going to be shaved by weeks-end. At no time was my child going to look like something out of a movie where the head is 99.99995 bald with a few straggling strands left. Reminders of a different time. Jerry was going to shave it. The staff told us to wait,that the it would take a while. It took almost three months for the full and final departure.
Our basic instinct was correct. Hair, massive amounts of hair, are a sign of health in children. If my child had hair there was not a real problem. The hair loss was dramatic but not rapid. It went a bit at a time, each strand that was found puts us one step closer to the reality of the situation. Each hair cut, to minimize the effect, was a step closer to embracing the truth of the situation. It all had to go. When it was leaving it was a sign of progress in the treatment. It did stay around long enough to protect her skin from the radiation and then it gave up the ghost and went silently. A step towards welcomed re-birth.
It then begin to return. It was so so soft. It was like a babies hair but no shine and a dull dead color. It was so soft and everyone wanted to touch it and just pet the soft soft strands. It reminded me of the covering of antler's in the spring. It was like a magnet. I think it comes in so people would give her the healing touch she needed. I stroked her head for hours. It was calming and very soothing for us both. Being receptive to kind touching is some thing we have all seemed to have lost. Even strangers like Garrison Keillor could not help themselves. The cat was very jelouse.
When her hair began to grow back, she began to feel more normal. Normal is good and she was ready for some normal times. People would look at her and they let themselves believe it was a life choice, and not a sign of a life and death stuggle. A sheik bit of Paris, a progressive mother or one that could not control the hair cuts any longer. It did not matter. The new hair did not scream LUKEMIA to everyone.
The new hair became longer and there were even bad hair moments, more like nano seconds. She would wake up in the morning and little bits would be sticking straight up. It was back! She loved it and joked about it and felt relieved.
Rumor had it that the hair would go again in the first and second Delayed Intensification (DI). She did not loose much during the first DI, she lost her eye brows and lashes but the hair pretty much stayed put. She then began to complain about the grow back pain. But she knew it meant she was getting her hair back.
No one was prepared for the massive loss during this second round of DI. It started about a week ago and it is fleeing the jurisdiction. I think that in a strong wind it would be gone. It is being shaved this week-end. Shiny bald and beautiful. I can touch it again.
She is doing okay right but is having a hard time as we are so close to the end. No sense of humor about any more delays. Everyone is ready for this to be over. I think the hair is leaving so people with treat her with a little bit more care. Her fragility is just under the surface and I wonder if it helps people understand and be more accepting of her. They don't ask too many questions and are more gentle in their interactions. She smiles and is so brave walking around with her balding head. Her very spirit is an inspiration. She is living with this thing, this unwanted visitor I still can not spell.
It will come back. By the time we go to Venice she will be back to sheik. When it comes in this time, it will do so to stay. Each rapidly dividing cell that is added on will be a cell will be healthy and there to stay for the duration.
I just hope it is red and curly.
It was here at the beginning when I wanted to think that my child would not look like those other children. How could all that hair, hair that has never been off her head, leave. I had never seen her bare scalp. It is one of the white lies that I let myself believe. I didn't want to be shallow and it took a couple of days to even ask the question: "Will her hair really fall out?" They keep talking about how chemo therapy kills rapidly dividing cells. When the question was finally asked, the answer was "Yes. Yes, hair is a rapidly dividing cells".
My desire to cling to the long beautiful healthy locks only lasted about 5 days. And then M-E had a new room mate and we all looked at her and then there was a consensus that all the hair was going to be shaved by weeks-end. At no time was my child going to look like something out of a movie where the head is 99.99995 bald with a few straggling strands left. Reminders of a different time. Jerry was going to shave it. The staff told us to wait,that the it would take a while. It took almost three months for the full and final departure.
Our basic instinct was correct. Hair, massive amounts of hair, are a sign of health in children. If my child had hair there was not a real problem. The hair loss was dramatic but not rapid. It went a bit at a time, each strand that was found puts us one step closer to the reality of the situation. Each hair cut, to minimize the effect, was a step closer to embracing the truth of the situation. It all had to go. When it was leaving it was a sign of progress in the treatment. It did stay around long enough to protect her skin from the radiation and then it gave up the ghost and went silently. A step towards welcomed re-birth.
It then begin to return. It was so so soft. It was like a babies hair but no shine and a dull dead color. It was so soft and everyone wanted to touch it and just pet the soft soft strands. It reminded me of the covering of antler's in the spring. It was like a magnet. I think it comes in so people would give her the healing touch she needed. I stroked her head for hours. It was calming and very soothing for us both. Being receptive to kind touching is some thing we have all seemed to have lost. Even strangers like Garrison Keillor could not help themselves. The cat was very jelouse.
When her hair began to grow back, she began to feel more normal. Normal is good and she was ready for some normal times. People would look at her and they let themselves believe it was a life choice, and not a sign of a life and death stuggle. A sheik bit of Paris, a progressive mother or one that could not control the hair cuts any longer. It did not matter. The new hair did not scream LUKEMIA to everyone.
The new hair became longer and there were even bad hair moments, more like nano seconds. She would wake up in the morning and little bits would be sticking straight up. It was back! She loved it and joked about it and felt relieved.
Rumor had it that the hair would go again in the first and second Delayed Intensification (DI). She did not loose much during the first DI, she lost her eye brows and lashes but the hair pretty much stayed put. She then began to complain about the grow back pain. But she knew it meant she was getting her hair back.
No one was prepared for the massive loss during this second round of DI. It started about a week ago and it is fleeing the jurisdiction. I think that in a strong wind it would be gone. It is being shaved this week-end. Shiny bald and beautiful. I can touch it again.
She is doing okay right but is having a hard time as we are so close to the end. No sense of humor about any more delays. Everyone is ready for this to be over. I think the hair is leaving so people with treat her with a little bit more care. Her fragility is just under the surface and I wonder if it helps people understand and be more accepting of her. They don't ask too many questions and are more gentle in their interactions. She smiles and is so brave walking around with her balding head. Her very spirit is an inspiration. She is living with this thing, this unwanted visitor I still can not spell.
It will come back. By the time we go to Venice she will be back to sheik. When it comes in this time, it will do so to stay. Each rapidly dividing cell that is added on will be a cell will be healthy and there to stay for the duration.
I just hope it is red and curly.
Wednesday, June 22, 2005
June 21, 2004 to June 21 2005
2004 we went to Dr. May, Neuro Opthomologist. Never knew they existed. He confirmed, for the third and last time the optic nerve issue and added some vision loss. He scheduled us for a MRI and then said it was okay to send her to camp. As I sat in the waiting room and listened to the receptionist explain that it would take a month to see the Doctor, I knew we were not on a normal path. We were waiting for an 11:00 appointment on a Monday after having it made on Friday. Oh, well, I knew that we were not in good territory. Belle wanted to have a spinal tap to see what the pressure was. He did make me feel better in not wanting to rush her through that procedure.
2005: We are waiting, waiting for the bone marrow to start producing White Blood Cells. It is mad at us. It has learned that we don't like white blood cells so we are going to pretend to ignore it for awhile and trick it into making more so we can kill them again. M-E said it was like that game with gophers that pop up and you hit them on the head with a hammer. We have the hammer and we are watching and waiting. I told her we could develop a game for that purpose. The gophers could be all the different bad cells and the hammers could have names like vincristine, methotrexate Ara-C and things like that. Just an idea. Thankfully the market would be very small.
2005: We are waiting, waiting for the bone marrow to start producing White Blood Cells. It is mad at us. It has learned that we don't like white blood cells so we are going to pretend to ignore it for awhile and trick it into making more so we can kill them again. M-E said it was like that game with gophers that pop up and you hit them on the head with a hammer. We have the hammer and we are watching and waiting. I told her we could develop a game for that purpose. The gophers could be all the different bad cells and the hammers could have names like vincristine, methotrexate Ara-C and things like that. Just an idea. Thankfully the market would be very small.
Monday, June 20, 2005
Could It Just Be Easy Once in Awhile?
Yesterday was wonderful. We had a great day, I did laundry and caught up on some much needed sewing. We were ready to pack and face the music.
First we took a detour to Redmond and went to see Garrison Keller and the Rhubarb Tour. It was a great evening, parking was easy, seats were great, 4th row back, good show. It lasted from 7:00 until 10:15. Then we were able to go to another place and meet him. There were about 100 people to start with and by the time he was signing things, there were about 35. M-E was bound to get his autograph. She had a book by Charles Shultz, "The Secret of Life" She thought that was the right choice for a book signing by one of her favorite people.
She waited her turn. A very tall gentlemen took the camera and could not get it to work. Garrison let her come back and stood behind her and looked at her hair and began to pet it and kept saying . "It is so soft". As he signed the book he looked at it and said," I have the Secret to Life in my hands and I am giving it back."
We headed home and she became very quiet and said "Mom, this night will make tomorrow easier."
We were up later than usual and went to breakfast. We headed to the hospital and had the required blood draw. We were ready. We were packed, we had a great parking place and a wagon.
Then the counts came. Tracy Hense, came in and said: "Well we won't be poisoning you today!" Her counts had dropped from 2650 to 220 in a week. She has not been this low since Thanksgiving. The Cytoxon and the Ara-C would do too much harm to her body and we would be in the hospital for a long time.
My Plea, Prayer, Complaint. (Your Choice)
Oh God, I have this all set. Lori is coming this week, Mom is coming the next two weeks so we are covered on the tranfusion week. We are so close, so very very close to the end of this hard treatment. We have to start this phase so we can be done. I really thing I have learned the lessons of this last year. I know I have no control over anything. I know that good comes from every situation. I know that you provide what we need. I know that waiting does not kill me and that I should be happy to have those moments to think about other things instead of being upset. If not for me, let this process be done. I am so tired of watching M-E struggle with this whole thing. She wants answers and I don't have them for her. I know, I have no control, I need to be here and now and take it one hour at a time.
Oh well. Tomorrow will come and go and we will get through this, but I am not very happy about it.
First we took a detour to Redmond and went to see Garrison Keller and the Rhubarb Tour. It was a great evening, parking was easy, seats were great, 4th row back, good show. It lasted from 7:00 until 10:15. Then we were able to go to another place and meet him. There were about 100 people to start with and by the time he was signing things, there were about 35. M-E was bound to get his autograph. She had a book by Charles Shultz, "The Secret of Life" She thought that was the right choice for a book signing by one of her favorite people.
She waited her turn. A very tall gentlemen took the camera and could not get it to work. Garrison let her come back and stood behind her and looked at her hair and began to pet it and kept saying . "It is so soft". As he signed the book he looked at it and said," I have the Secret to Life in my hands and I am giving it back."
We headed home and she became very quiet and said "Mom, this night will make tomorrow easier."
We were up later than usual and went to breakfast. We headed to the hospital and had the required blood draw. We were ready. We were packed, we had a great parking place and a wagon.
Then the counts came. Tracy Hense, came in and said: "Well we won't be poisoning you today!" Her counts had dropped from 2650 to 220 in a week. She has not been this low since Thanksgiving. The Cytoxon and the Ara-C would do too much harm to her body and we would be in the hospital for a long time.
My Plea, Prayer, Complaint. (Your Choice)
Oh God, I have this all set. Lori is coming this week, Mom is coming the next two weeks so we are covered on the tranfusion week. We are so close, so very very close to the end of this hard treatment. We have to start this phase so we can be done. I really thing I have learned the lessons of this last year. I know I have no control over anything. I know that good comes from every situation. I know that you provide what we need. I know that waiting does not kill me and that I should be happy to have those moments to think about other things instead of being upset. If not for me, let this process be done. I am so tired of watching M-E struggle with this whole thing. She wants answers and I don't have them for her. I know, I have no control, I need to be here and now and take it one hour at a time.
Oh well. Tomorrow will come and go and we will get through this, but I am not very happy about it.
Sunday, June 19, 2005
The Many Layers of Life
We are all pretending that to day is just a great sunny week-end day. I have had too much coffee, M-E slept in and is still in her jammies. I have done a bit of gardening and some puttering. I will do some shopping and some cleaning as if tomorrow is a normal day.
I am also making mental notes.
Make sure your hospital bag is packed.
Make sure you buy hospital food.
Don't forget to pack your pills and ditty bag.
Do we need the computer? only dial-up???? for one night.
Don't forget to write Alison some pet instructions.
Pack two books.
Figure out movies for the long night.
All of this is going on while we are pretending it is not happening. There is so much dread. I just hate it. I will just ignore it right now. I am going to go to the basement and finish a quilt and do laundry. Now that sounds normal.
We will do it, I know we will.
I am also making mental notes.
Make sure your hospital bag is packed.
Make sure you buy hospital food.
Don't forget to pack your pills and ditty bag.
Do we need the computer? only dial-up???? for one night.
Don't forget to write Alison some pet instructions.
Pack two books.
Figure out movies for the long night.
All of this is going on while we are pretending it is not happening. There is so much dread. I just hate it. I will just ignore it right now. I am going to go to the basement and finish a quilt and do laundry. Now that sounds normal.
We will do it, I know we will.
Saturday, June 18, 2005
A year ago today.
We had fasting blood draws and an appointment with our regular doctor. He ruled out lukemia (Jokes on all of us. Had the lab looked at a slide they would have seen bad lymphoblasts but then her counts were normal and now with the medical industry the way it is.......) He ruled out diabetes, kidney and heart failure and all the other medical possibilities. We then went to see Steven Kim, Dr. "Well, it might not be a brain tumor." He was a retinal specialist. He sent us on to Dr. May,
a Neuro Opthomoligist.
That night about 8:30 our doctor called to see what had transpired. Getting a call from your primary care physician that late at night does not make you feel better about what you are facing.
It was a week-end of worry. Little did we know.
a Neuro Opthomoligist.
That night about 8:30 our doctor called to see what had transpired. Getting a call from your primary care physician that late at night does not make you feel better about what you are facing.
It was a week-end of worry. Little did we know.
A Party
This is such a great age. There is drama and angst and self doubt as they prepare to really become teenagers. But most of all there is laughter. Deep, into your soul laughter. The kind that lifts everyone's spirits. Everyone had such a great, great time. They ate, oh god did they eat, all while discussing their current diets. They swam and dove and slid, they just hovered in a group in the pool and talked and laughed and giggled.
They opened presents and ate some more. I have no idea how late they would have been up last night had parents not arrived to force their children into the cars. A deep conversation began with three of the girls and it was hard to break up. I am sure the phones will be burning up this week-end.
Then they left and it was quiet. M-E just broke into tears. Don't get me wrong, she had a great great time. She was happy with everything but she was feeling the lose of her 7th grade year and the dread of the upcoming weeks. She was just sad. It comes out every now and then. She feels like she has to ask permission, which she doesn't, but I always give it anyway, and then she cried. She was tired and needed to get it out. It reminded me of when she was a tiny baby. I would give her to Johnny and tell him to make her cry so she would go to sleep. It always worked and it worked last night.
Laughter and tears are very closely related and we had a good dose of both. I wonder is she knew why I had wanted to cry last night?
Oh, in case anyone is wondering, Children of this generation do not sing Broadway Musicals or chant rap music, they sing Disney "Classics"
Friday, June 17, 2005
June 17 2005
One year ago today we found out something was wrong with M-E. We are having a celebration but not what you might think. I have not mentioned why I remember this day. I am going to keep this day deep in the crevice of my heart. We are having a party.
M-E is 5 days away from her last dose of Dexemethezone and has not chemo this week. She is feeling great. She announced she was going to have a kid birthday party. She told me that we would have it and she would organize it, make the calls, arrange for transportation of the kids and Ana would do the shopping. I was to arrange to provide cash. Seemed reasonable. She has executed.
10 girls from her class will arrive this evening between the hours of 5:00 and 5:30 p.m. Pizza Hut will deliver at 5:45 p.m. We leave for the pool at 6:45 p.m. Return at 8;15 p.m. for cheese cake.
I will let you know how it goes. This is a great age. Great group of girls and a nice way to start this week-end. We are not talking about Monday until Monday.
So wish me luck.
M-E is 5 days away from her last dose of Dexemethezone and has not chemo this week. She is feeling great. She announced she was going to have a kid birthday party. She told me that we would have it and she would organize it, make the calls, arrange for transportation of the kids and Ana would do the shopping. I was to arrange to provide cash. Seemed reasonable. She has executed.
10 girls from her class will arrive this evening between the hours of 5:00 and 5:30 p.m. Pizza Hut will deliver at 5:45 p.m. We leave for the pool at 6:45 p.m. Return at 8;15 p.m. for cheese cake.
I will let you know how it goes. This is a great age. Great group of girls and a nice way to start this week-end. We are not talking about Monday until Monday.
So wish me luck.
Tuesday, June 14, 2005
Month 10 is complete.
We ignored yesterday but as I looked at the clock, I realized that 10 months ago we were sitting in an emergency room, praying for a miracle to happen. Waiting for the blood counts to come back and be a mistake. We were hoping against hope that we were asleep and the nightmare would be over soon.
Well in many ways we are doing the same things right now. Praying every day, hoping for a miracle. Hoping this does not come back. We know that this is our nightmare. We don't have any choice but to march on through to the end. Next week is the Cytoxon over night with the 8 doses of Ara-C during two weeks and a spinal tap with a Methotrexate chaser and some Thioguine for 28 doses. They give her the Dexemethesone to get her body ready for the upcoming onslaught. It will take her two or three weeks to recover and then should have smooth sailing with just weekly Chemo.
That is our summer, in a nutshell. Boy, just wait until next summer. You won't be able to find me. We will check into Seattle for a once a month visit and that will be it. Who knows what it will be. I better start clearing my calendar. Now that sounds like a plan.
I do have to acknowledge the miracles that have happened. We have been blessed.
One is time with Grandma Mary. We would never had had so much time and she is such a special person. She brings our neighborhood to life. Lesson learned, you can never give someone enough jam. Small smiles are worth all the big gestures rolled together.
Another is the support of the St. Joseph's community. They did not miss a step. "Ask and you shall receive." It is not just a silly old bible verse. It has great power.
Well in many ways we are doing the same things right now. Praying every day, hoping for a miracle. Hoping this does not come back. We know that this is our nightmare. We don't have any choice but to march on through to the end. Next week is the Cytoxon over night with the 8 doses of Ara-C during two weeks and a spinal tap with a Methotrexate chaser and some Thioguine for 28 doses. They give her the Dexemethesone to get her body ready for the upcoming onslaught. It will take her two or three weeks to recover and then should have smooth sailing with just weekly Chemo.
That is our summer, in a nutshell. Boy, just wait until next summer. You won't be able to find me. We will check into Seattle for a once a month visit and that will be it. Who knows what it will be. I better start clearing my calendar. Now that sounds like a plan.
I do have to acknowledge the miracles that have happened. We have been blessed.
One is time with Grandma Mary. We would never had had so much time and she is such a special person. She brings our neighborhood to life. Lesson learned, you can never give someone enough jam. Small smiles are worth all the big gestures rolled together.
Another is the support of the St. Joseph's community. They did not miss a step. "Ask and you shall receive." It is not just a silly old bible verse. It has great power.
The endless help from friends, the dinners, the kind thoughts, the supportive e-mails, the gardening, the laundy faries, the phone calls I never return. It has been so much help.
The chance to really, really evaluate priorities. We all give that idea lip service and I think we all look at priorities but there is this sort of idea that we have forever to work things out. We only have this moment to savor. I think that is why we are such nuts with the photos. We are trying to capture the experience. The mind's eye is our best camcorders. Our noses have lots of power also.
Well we keep moving. On the treadmill, no way to stop, even if we are very smart. Dad tells a story about some research being done with pigs and treadmills. The were not able to stop but soon learned they could put their feet on the sides and not have to use the tread mill surface. The researchers made the sides slick so they could not escape the inevitable. We are on that treadmill. No escape, but it does finally slow down and we are in better shape for having been here.
Saturday, June 11, 2005
Last day of School
We went, we prayed, we sang, we chatted with people, we looked at her report card. We were choked up when the last prayer was for Mary-Elizabeth. Mom and I both shed some tears and fought back the rest that wanted to come.
I know that prayer is powerful but to hear the prayers in person in front of the church full of people that know you or of you is a very different thing. I felt like I had been hit by a tsunami wave. Thousands of prayers have been said but this felt so different, so intiment. .
We have been physically gone from St. Joseph's school and church this year but we have been so much a part of the community. I realized how much I missed this year when I saw the 7th graders at the head of the church. They have grown so much since I last really looked at them, which was a year ago. Being away for a year has given me the opportunity to really see the changes. High heals, more hair on the boys, deeper voices, needs for real bras, they have transformed in such a short time. While we have been in Chemo World, the world has continued to spin and to change. It is strange on one hand but very comforting on another plain. The world will be there when we are ready and able to return.
I told one mother yesterday that if there was a year to miss, 7th was the best one. We have not had any 7th grade girl drama. ( They make movies about it.) No build up the the "What High school will I apply to?" angst. It has been a very easy year that way.
We have lived this very minimal life, no extra's, no distractions from the outside world.
I asked some questions about Maintenance. I was under the impression that we went to the hospital once a month, but then we know that I am never good at predicting schedules. The first 12 weeks goes like this: Hospital Chemo, oral chemo: Methotrexate once week, Mercatupurin every day for the entire 18 months, Prednisone ( five days only a month). On alternate weeks we go for evaluation to determine what her numbers are and they ajust her meds. They want to keep her ANC between 1500 and 2500. Our is between 5000 and 10,000.
I had hoped that this time would not one of imuno compromisation. It will be a good time no matter what. I guess we really are waiting for sushi.
I know that prayer is powerful but to hear the prayers in person in front of the church full of people that know you or of you is a very different thing. I felt like I had been hit by a tsunami wave. Thousands of prayers have been said but this felt so different, so intiment. .
We have been physically gone from St. Joseph's school and church this year but we have been so much a part of the community. I realized how much I missed this year when I saw the 7th graders at the head of the church. They have grown so much since I last really looked at them, which was a year ago. Being away for a year has given me the opportunity to really see the changes. High heals, more hair on the boys, deeper voices, needs for real bras, they have transformed in such a short time. While we have been in Chemo World, the world has continued to spin and to change. It is strange on one hand but very comforting on another plain. The world will be there when we are ready and able to return.
I told one mother yesterday that if there was a year to miss, 7th was the best one. We have not had any 7th grade girl drama. ( They make movies about it.) No build up the the "What High school will I apply to?" angst. It has been a very easy year that way.
We have lived this very minimal life, no extra's, no distractions from the outside world.
I asked some questions about Maintenance. I was under the impression that we went to the hospital once a month, but then we know that I am never good at predicting schedules. The first 12 weeks goes like this: Hospital Chemo, oral chemo: Methotrexate once week, Mercatupurin every day for the entire 18 months, Prednisone ( five days only a month). On alternate weeks we go for evaluation to determine what her numbers are and they ajust her meds. They want to keep her ANC between 1500 and 2500. Our is between 5000 and 10,000.
I had hoped that this time would not one of imuno compromisation. It will be a good time no matter what. I guess we really are waiting for sushi.
Thursday, June 09, 2005
Cheese Cake
She went to bed last night totally exhausted. We did a bout with bad dex induced heart burn about 1:00 a.m. A roll of Rolaides later, a pyramid of pillows and an hour and a half later sleep came again. Much needed restorative sleep.
I was up at the crack of dawn and out the door for a busy day. She slept late and woke up wanting to have dinner at the Cheese Cake Factory. She was able to go to the office with mom on the bus and then we went for dinner. She is back in bed. 4 good hours. Not bad. It is the little steps and the short moments.
I had a hearing in Snohomish County and as I was reentering down town a sea gull lost it's feather. It's action as it fell to ground was not what I had expected. It remained vertical in the air, the quill side pointed down. It then twirled and instead of going down to the ground in the predictable tornado type action, began to sort of slide sideways, almost like taking steps to the side and then down a bit. The feather traversed the entire intersection before it finally landed. No one appeared to notice.
It was a good visual lesson about our journey. It is not a journey in a particular direction but rather a jerky and unpredictable path on twirl at a time. The one thing that is certain is the eventual landing. We will get there. Where or when we land is another matter.
I was up at the crack of dawn and out the door for a busy day. She slept late and woke up wanting to have dinner at the Cheese Cake Factory. She was able to go to the office with mom on the bus and then we went for dinner. She is back in bed. 4 good hours. Not bad. It is the little steps and the short moments.
I had a hearing in Snohomish County and as I was reentering down town a sea gull lost it's feather. It's action as it fell to ground was not what I had expected. It remained vertical in the air, the quill side pointed down. It then twirled and instead of going down to the ground in the predictable tornado type action, began to sort of slide sideways, almost like taking steps to the side and then down a bit. The feather traversed the entire intersection before it finally landed. No one appeared to notice.
It was a good visual lesson about our journey. It is not a journey in a particular direction but rather a jerky and unpredictable path on twirl at a time. The one thing that is certain is the eventual landing. We will get there. Where or when we land is another matter.
Tuesday, June 07, 2005
The Last Dose of Doxirubinson and we are glad. I should not have read this today.
Doxorubicin
(dok-so-ROO-bih-sin)
Brand names: Adriamycin®, Rubex®
Chemocare.com uses generic names in all descriptions of drugs. Adriamycin is the trade name for doxorubicin. Rubex is another name for doxorubicin. In some cases, health care professionals may use the trade name adriamycin or other names rubex when referring to the generic drug name doxorubicin.
Drug type: Doxorubicin is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug. This medication is classified as an “anthracycline antiobiotic.” (For more detail, see “How this drug works” section below).
What this drug is used for:
Cancers treated with doxorubicin include: bladder, breast, head and neck, leukemia (some types), liver, lung, lymphomas, mesothelioma, multiple myeloma, neuroblastoma, ovary, pancreas, prostate, sarcomas, stomach, testis (germ cell), thyroid, uterus.
Note: If a drug has been approved for one use, physicians sometimes elect to use this same drug for other problems if they believe it might be helpful.
How this drug is given:
Doxorubicin is given through a vein by intravenous injection (IV). The syringe needle is placed directly into the vein or central line and the drug is given over several minutes. Doxorubicin can also be given by continuous infusion. Rarely, doxorubicin is given by injection into an artery. There is no pill form of doxorubicin.
Doxorubicin is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives this drug must be carefully trained. If you notice redness or swelling at the IV site while you are receiving doxorubicin, alert your health care professional immediately.
The amount of doxorubicin you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer you have. Your doctor will determine your exact dosage and schedule.
Side effects: Important things to remember about the side effects of doxorubicin:
You will not get all of the side effects mentioned below.
Side effects are often predictable in terms of their onset, duration, and severity.
Side effects are almost always reversible and will go away after therapy is complete.
Side effects are quite manageable. There are many options to minimize or prevent them.
The following side effects are common (occurring in greater than 30%) for patients taking doxorubicin:Early: (within one week after treatment begins)
Pain along the site where the medication was given
Nausea or vomiting
Later: (within two weeks after treatment begins)
Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.
Onset: 7 daysNadir: 10-14 daysRecovery: 21-28 days
Mouth sores
Hair loss on the scalp or elsewhere on the body (called alopecia). Most patients do lose some or all of their hair during their treatment. But your hair will grow back after treatment is completed.
The following side effects are less common (occurring in 10-29%) for patients taking doxorubicin:
Early: (within one week after treatment begins)
Eyes watering
Urine may appear red, red-brown, orange or pink from the color of the medication for one to two days after you receive a dose.
Later: (within two weeks after treatment begins)
Darkening of the nail beds.
Darkening of the skin where previous radiation treatment has been given.
Problems with fertility – ability to bear children. (occurs in about 10% of both men and women – this should be discussed with your doctor prior to therapy).
A serious but uncommon side effect of doxorubicin can be interference with the pumping action of the heart. You can receive only up to a certain amount of doxorubicin during your lifetime. This “lifetime maximum dose” may be lower if you have heart disease risk factors such as radiation to the chest, advancing age, and use of other heart-toxic drugs. Your doctor will check your heart function before you may take any doxorubicin and will monitor your heart closely during your treatment. Dose-related heart problems can occur as late as 7 or 8 years after treatments have ended.
Delayed effects:There is a slight risk of developing a blood cancer such as leukemia years after taking doxorubicin. Talk to your doctor about this risk.
This list includes common and less common and important side effects for those taking doxorubicin. Side effects that are very rare – occurring in less than 10 percent of patients – are not listed here. But you should always inform your health care provider if you experience any unusual symptoms.
When to contact your doctor or health care provider:Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:
Fever of 100.5º F (38º C), chills (possible signs of infection)
Blistering at the IV site
Shortness of breath, wheezing, difficulty breathing, closing up of the throat, swelling of facial features, hives (possible allergic reaction).
The following symptoms require medical attention, but are not emergency situations. Contact your health care provider within 24 hours of noticing any of the following:
Mouth sores (painful redness, swelling or ulcers)
Nausea (interferes with ability to eat and unrelieved with prescribed medication)
Vomiting (vomiting more than 4-5 times in a 24 hour period)
Diarrhea (4-6 episodes in a 24-hour period)
Fast or irregular heart beats
Unusual bleeding or bruising
Black or tarry stools, or blood in your stools or urine
Extreme fatigue (unable to carry on self-care activities)
Swelling of the feet or ankles
Precautions:
Before starting doxorubicin treatment, make sure you tell your doctor about any other medications you are taking (including over-the-counter, vitamins, or herbal remedies). Do not take aspirin or products containing aspirin unless your doctor permits this.
Do not receive any kind of vaccination without your doctor’s approval while taking doxorubicin.
For both men and women: Use contraceptives, and do not conceive a child (get pregnant) while taking doxorubicin. Barrier methods of contraception, such as condoms, are recommended. Discuss with your doctor when you may safely become pregnant after therapy.
Do not breast feed while taking this medication.
People with congestive heart failure, those who have already had high doses of this drug or a similar drug, and those with permanent problems with blood counts (bone marrow suppression) cannot receive this drug.
Self care tips:
Apply ice if you have any pain, redness or swelling at the IV site, and notify your doctor.
You may be at risk of infection so try to avoid crowds or people with colds, and report fever or any other signs of infection immediately to your health care provider.
Wash your hands often.
To reduce nausea, take anti-nausea medications as prescribed by your doctor, and eat small, frequent meals.
To help treat/prevent mouth sores, use a soft toothbrush, and rinse three times a day with 1 teaspoon of baking soda mixed with 8 ounces of water.
Use an electric razor and a soft toothbrush to minimize bleeding.
Avoid contact sports or activities that could cause injury.
Avoid sun exposure. Wear SPF 15 (or higher) sunblock and protective clothing.
Drink two to three quarts of fluid every 24 hours, unless you are instructed otherwise.
Get plenty of rest.
Maintain good nutrition.
In general, drinking alcoholic beverages should be minimized or avoided. You should discuss this with your doctor.
If you experience symptoms or side effects, be sure to discuss them with your health care team. They can prescribe medications and/or offer other suggestions that are effective in managing such problems.
Monitoring and Testing:A baseline heart evaluation is recommended before starting treatment. A full blood count will be done regularly, and a heart function test will be done as your doctor prescribes. Various tests to monitor the function of other organs (such as your kidneys and liver) will also be ordered by your physician.
How this drug works: Cancerous tumors are characterized by cell division, which is no longer controlled as it is in normal tissue. “Normal” cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. Cancer cells no longer have the normalchecks and balances in place that control and limit cell division. The process of cell division, whether normal or cancerous cells, is through the cell cycle. The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division).
The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis).
Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles.
Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. Chemotherapy will kill all cells that are rapidly dividing. The “normal” cells will grow back and be healthy but in the meantime, side effects occur. The “normal” cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss. Different drugs may affect different parts of the body.
Doxorubicin is classified as an antitumor antibiotic. Antitumor antibiotics are made from natural products produced by species of the soil fungus Streptomyces. These drugs act during multiple phases of the cell cycle and are considered cell-cycle specific. There are several types of antitumor antibiotics:
Anthracyclines: Doxorubicin, Daunomycin, Mitoxantrone, and Idarubicin
Chromomycins: Dactinomycin and Plicamycin
Miscellaneous: Mitomycin and Bleomycin
Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.
Submit your questions and comments here
Less common - Skin Reactions
Less common - Sexuality
Common - Nausea & Vomiting
Common - Mouth Sores
Common - Low Blood Counts
Common - Injection Site Reactions
Common - Hair Loss
Less common - Eye Problems
Chemo Care is your source for chemotherapy, chemo side effects and chemotherapy drug information.Copyright © 2005 by The Cleveland Clinic Foundation. All Rights Reserved. Chemocare.com is a program of the Scott Hamilton CARES initiative Content provided by Cleveland Clinic Cancer CenterDisclaimer References Contributors Notice of Privacy PracticesSponsor Site Map
(dok-so-ROO-bih-sin)
Brand names: Adriamycin®, Rubex®
Chemocare.com uses generic names in all descriptions of drugs. Adriamycin is the trade name for doxorubicin. Rubex is another name for doxorubicin. In some cases, health care professionals may use the trade name adriamycin or other names rubex when referring to the generic drug name doxorubicin.
Drug type: Doxorubicin is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug. This medication is classified as an “anthracycline antiobiotic.” (For more detail, see “How this drug works” section below).
What this drug is used for:
Cancers treated with doxorubicin include: bladder, breast, head and neck, leukemia (some types), liver, lung, lymphomas, mesothelioma, multiple myeloma, neuroblastoma, ovary, pancreas, prostate, sarcomas, stomach, testis (germ cell), thyroid, uterus.
Note: If a drug has been approved for one use, physicians sometimes elect to use this same drug for other problems if they believe it might be helpful.
How this drug is given:
Doxorubicin is given through a vein by intravenous injection (IV). The syringe needle is placed directly into the vein or central line and the drug is given over several minutes. Doxorubicin can also be given by continuous infusion. Rarely, doxorubicin is given by injection into an artery. There is no pill form of doxorubicin.
Doxorubicin is a vesicant. A vesicant is a chemical that causes extensive tissue damage and blistering if it escapes from the vein. The nurse or doctor who gives this drug must be carefully trained. If you notice redness or swelling at the IV site while you are receiving doxorubicin, alert your health care professional immediately.
The amount of doxorubicin you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer you have. Your doctor will determine your exact dosage and schedule.
Side effects: Important things to remember about the side effects of doxorubicin:
You will not get all of the side effects mentioned below.
Side effects are often predictable in terms of their onset, duration, and severity.
Side effects are almost always reversible and will go away after therapy is complete.
Side effects are quite manageable. There are many options to minimize or prevent them.
The following side effects are common (occurring in greater than 30%) for patients taking doxorubicin:Early: (within one week after treatment begins)
Pain along the site where the medication was given
Nausea or vomiting
Later: (within two weeks after treatment begins)
Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.
Onset: 7 daysNadir: 10-14 daysRecovery: 21-28 days
Mouth sores
Hair loss on the scalp or elsewhere on the body (called alopecia). Most patients do lose some or all of their hair during their treatment. But your hair will grow back after treatment is completed.
The following side effects are less common (occurring in 10-29%) for patients taking doxorubicin:
Early: (within one week after treatment begins)
Eyes watering
Urine may appear red, red-brown, orange or pink from the color of the medication for one to two days after you receive a dose.
Later: (within two weeks after treatment begins)
Darkening of the nail beds.
Darkening of the skin where previous radiation treatment has been given.
Problems with fertility – ability to bear children. (occurs in about 10% of both men and women – this should be discussed with your doctor prior to therapy).
A serious but uncommon side effect of doxorubicin can be interference with the pumping action of the heart. You can receive only up to a certain amount of doxorubicin during your lifetime. This “lifetime maximum dose” may be lower if you have heart disease risk factors such as radiation to the chest, advancing age, and use of other heart-toxic drugs. Your doctor will check your heart function before you may take any doxorubicin and will monitor your heart closely during your treatment. Dose-related heart problems can occur as late as 7 or 8 years after treatments have ended.
Delayed effects:There is a slight risk of developing a blood cancer such as leukemia years after taking doxorubicin. Talk to your doctor about this risk.
This list includes common and less common and important side effects for those taking doxorubicin. Side effects that are very rare – occurring in less than 10 percent of patients – are not listed here. But you should always inform your health care provider if you experience any unusual symptoms.
When to contact your doctor or health care provider:Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:
Fever of 100.5º F (38º C), chills (possible signs of infection)
Blistering at the IV site
Shortness of breath, wheezing, difficulty breathing, closing up of the throat, swelling of facial features, hives (possible allergic reaction).
The following symptoms require medical attention, but are not emergency situations. Contact your health care provider within 24 hours of noticing any of the following:
Mouth sores (painful redness, swelling or ulcers)
Nausea (interferes with ability to eat and unrelieved with prescribed medication)
Vomiting (vomiting more than 4-5 times in a 24 hour period)
Diarrhea (4-6 episodes in a 24-hour period)
Fast or irregular heart beats
Unusual bleeding or bruising
Black or tarry stools, or blood in your stools or urine
Extreme fatigue (unable to carry on self-care activities)
Swelling of the feet or ankles
Precautions:
Before starting doxorubicin treatment, make sure you tell your doctor about any other medications you are taking (including over-the-counter, vitamins, or herbal remedies). Do not take aspirin or products containing aspirin unless your doctor permits this.
Do not receive any kind of vaccination without your doctor’s approval while taking doxorubicin.
For both men and women: Use contraceptives, and do not conceive a child (get pregnant) while taking doxorubicin. Barrier methods of contraception, such as condoms, are recommended. Discuss with your doctor when you may safely become pregnant after therapy.
Do not breast feed while taking this medication.
People with congestive heart failure, those who have already had high doses of this drug or a similar drug, and those with permanent problems with blood counts (bone marrow suppression) cannot receive this drug.
Self care tips:
Apply ice if you have any pain, redness or swelling at the IV site, and notify your doctor.
You may be at risk of infection so try to avoid crowds or people with colds, and report fever or any other signs of infection immediately to your health care provider.
Wash your hands often.
To reduce nausea, take anti-nausea medications as prescribed by your doctor, and eat small, frequent meals.
To help treat/prevent mouth sores, use a soft toothbrush, and rinse three times a day with 1 teaspoon of baking soda mixed with 8 ounces of water.
Use an electric razor and a soft toothbrush to minimize bleeding.
Avoid contact sports or activities that could cause injury.
Avoid sun exposure. Wear SPF 15 (or higher) sunblock and protective clothing.
Drink two to three quarts of fluid every 24 hours, unless you are instructed otherwise.
Get plenty of rest.
Maintain good nutrition.
In general, drinking alcoholic beverages should be minimized or avoided. You should discuss this with your doctor.
If you experience symptoms or side effects, be sure to discuss them with your health care team. They can prescribe medications and/or offer other suggestions that are effective in managing such problems.
Monitoring and Testing:A baseline heart evaluation is recommended before starting treatment. A full blood count will be done regularly, and a heart function test will be done as your doctor prescribes. Various tests to monitor the function of other organs (such as your kidneys and liver) will also be ordered by your physician.
How this drug works: Cancerous tumors are characterized by cell division, which is no longer controlled as it is in normal tissue. “Normal” cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. Cancer cells no longer have the normalchecks and balances in place that control and limit cell division. The process of cell division, whether normal or cancerous cells, is through the cell cycle. The cell cycle goes from the resting phase, through active growing phases, and then to mitosis (division).
The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis).
Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific. Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific. The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective. This is why chemotherapy is typically given in cycles.
Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. Chemotherapy will kill all cells that are rapidly dividing. The “normal” cells will grow back and be healthy but in the meantime, side effects occur. The “normal” cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss. Different drugs may affect different parts of the body.
Doxorubicin is classified as an antitumor antibiotic. Antitumor antibiotics are made from natural products produced by species of the soil fungus Streptomyces. These drugs act during multiple phases of the cell cycle and are considered cell-cycle specific. There are several types of antitumor antibiotics:
Anthracyclines: Doxorubicin, Daunomycin, Mitoxantrone, and Idarubicin
Chromomycins: Dactinomycin and Plicamycin
Miscellaneous: Mitomycin and Bleomycin
Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.
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Less common - Skin Reactions
Less common - Sexuality
Common - Nausea & Vomiting
Common - Mouth Sores
Common - Low Blood Counts
Common - Injection Site Reactions
Common - Hair Loss
Less common - Eye Problems
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Sunday, June 05, 2005
Sisterhood of the Traveling Pants/Star Wars and the great dividers
Tastefully handled (even though the child that had the fling with her coach is okay afterward because he comes to say he is sorry,) this is not the time I should be watching 12 year olds die of lukemia because they have stopped treatment. Little remembered side plot from a book I read a couple of years ago. It was not the most important point in the story at that time. Boy........ what a difference a moment in time makes.
It was fun going to the movies. I truthfully did not see a single guy there. They were watching weird futuristic creatures get decapitate. Oh well.
Star Wars has become the new Viet Nam. The rule used to be that you could not date anyone that did remember watching the body counts on the T.V. news. Now we have to change the rule. Only people that saw Star Wars in the movie theater in 1974? are allowed to date each other. I guess we need to stick together. I guess that is what makes us a generation our memories: the Beattles coming to America, Death 0f Kennedy, the First Walk on the Moon, Vietnam, Watergate, Kent State, Nixon Resigning, Death of John Lennon, The Berlin Wall coming down, Tineman Square, all of those sorts of things. I guess we all have moments that define our point of view and our lives.
Some outside events, some inside moments. We all get out own selection and if you are not present when they happen, they never quite affect your life the same way. I remember the death of Elvis but then he was not a central figure in my life. He is more a moment to look back on. There has been a lot of James Dean discussion but then I missed his time also. Frank Sinatra has a different affect on my mom then he ever did on me. The original Star Wars still makes me giddy. M-E and her contemporaries just complain about the fact it is not very glitzzy.
We are living through an event with M-E that will affect us like 911. It will color our perception of the world in a way that it won't be like everyone else. I have been so into this deep cavern for so long that I have not noticed how this has affected others. Most people try to keep it away from me. The 7th grade is doing a healing ceremony for M-E next week. She was a bit unsure about it but has agreed. I was discussing this with my mom and she said, "Sally you have to let them do it. People feel like they want to do something and there is nothing they can do. Nothing any of us can do but wait." I could sense the fear in her voice but also the great strength that is there. I guess that is why we have to hold each other extra close, listen extra hard and know that while there are lots of big plots swirling around us there are some little ones that mean as much ot some people.
We all saw the Sisterhood of the Traveling Pants. It was a good movie, but just a very different movie for me.
It was fun going to the movies. I truthfully did not see a single guy there. They were watching weird futuristic creatures get decapitate. Oh well.
Star Wars has become the new Viet Nam. The rule used to be that you could not date anyone that did remember watching the body counts on the T.V. news. Now we have to change the rule. Only people that saw Star Wars in the movie theater in 1974? are allowed to date each other. I guess we need to stick together. I guess that is what makes us a generation our memories: the Beattles coming to America, Death 0f Kennedy, the First Walk on the Moon, Vietnam, Watergate, Kent State, Nixon Resigning, Death of John Lennon, The Berlin Wall coming down, Tineman Square, all of those sorts of things. I guess we all have moments that define our point of view and our lives.
Some outside events, some inside moments. We all get out own selection and if you are not present when they happen, they never quite affect your life the same way. I remember the death of Elvis but then he was not a central figure in my life. He is more a moment to look back on. There has been a lot of James Dean discussion but then I missed his time also. Frank Sinatra has a different affect on my mom then he ever did on me. The original Star Wars still makes me giddy. M-E and her contemporaries just complain about the fact it is not very glitzzy.
We are living through an event with M-E that will affect us like 911. It will color our perception of the world in a way that it won't be like everyone else. I have been so into this deep cavern for so long that I have not noticed how this has affected others. Most people try to keep it away from me. The 7th grade is doing a healing ceremony for M-E next week. She was a bit unsure about it but has agreed. I was discussing this with my mom and she said, "Sally you have to let them do it. People feel like they want to do something and there is nothing they can do. Nothing any of us can do but wait." I could sense the fear in her voice but also the great strength that is there. I guess that is why we have to hold each other extra close, listen extra hard and know that while there are lots of big plots swirling around us there are some little ones that mean as much ot some people.
We all saw the Sisterhood of the Traveling Pants. It was a good movie, but just a very different movie for me.
Friday, June 03, 2005
Why I hate to Fold Laundry and do other mindless tasks
My sister pointed out that I am dead from my neck down. I could be impaled on a fence post and I would be oblivious to the event. This in some ways is good and in others it is bad. The good part is I can get up every day and keep going, the bad news it that I don't quite understand why I have a temperature of 101 for no apparent reason every evening now. It seems to last for 5- 6 hours. Oh, well it is gone today, it must not be something I need to worry about right now until tonight.
So back to the point. Cloth folding, dish washer emptying, back deck sweeping. These are mindless tasks, in other words, tasks that take no brain power to complete. While doing such tasks my mind wonders. Wondering brain waves are bad noogies right now. If I have a moment that my brain is not engaged things go something like this:
'WE are almost done but then are we really done? Will there be a time that we don't worry? Will I ever get to be a Grandmother, will she ever marry. Will he be a nice boy or will he have tattoo and be a slacker and someone that only wants to work at 7-11. How will they pay for her ongoing medical care? When did tattoos become so great, why did Cher get her's removed. And why did she do her nose and did it change her singing style. Do I care? When will the jury be back on Michael Jackson and why does Jerry T have a white Thriller jacket and not a red one? When should I get my hair done. I should not complain, I have hair. I need to take a shower and I need new shampoo and maybe I will cut my bangs but then Jerry will yell at time for doing so but then why does he have anything to say about it. I should call him and I should call some other people. I think Simon is having a graduation thing and I can not believe that he graduating but then that's what happens when kids grow up. I hope M-E gets to graduate. I wonder if she will and if she does I wonder if she will get to go to the college of her choice or if there will be money for that given all the medical bills we are racking up because the policies have changed and no one will talk to me about how to determine what I really owe and now that Bush has changed the bankruptcy laws and I have missed so much work , how will I be able to take care of it all and should be worrying at all given it is all speculation and I know I am supposed to keep a positive attitude but then that makes you so much more surprised when things don't work out but then I feel like if they don't work out as we hope then I will be the one that failed because I did not keep a positive attitude.
SEE I should not fold cloth.
So back to the point. Cloth folding, dish washer emptying, back deck sweeping. These are mindless tasks, in other words, tasks that take no brain power to complete. While doing such tasks my mind wonders. Wondering brain waves are bad noogies right now. If I have a moment that my brain is not engaged things go something like this:
'WE are almost done but then are we really done? Will there be a time that we don't worry? Will I ever get to be a Grandmother, will she ever marry. Will he be a nice boy or will he have tattoo and be a slacker and someone that only wants to work at 7-11. How will they pay for her ongoing medical care? When did tattoos become so great, why did Cher get her's removed. And why did she do her nose and did it change her singing style. Do I care? When will the jury be back on Michael Jackson and why does Jerry T have a white Thriller jacket and not a red one? When should I get my hair done. I should not complain, I have hair. I need to take a shower and I need new shampoo and maybe I will cut my bangs but then Jerry will yell at time for doing so but then why does he have anything to say about it. I should call him and I should call some other people. I think Simon is having a graduation thing and I can not believe that he graduating but then that's what happens when kids grow up. I hope M-E gets to graduate. I wonder if she will and if she does I wonder if she will get to go to the college of her choice or if there will be money for that given all the medical bills we are racking up because the policies have changed and no one will talk to me about how to determine what I really owe and now that Bush has changed the bankruptcy laws and I have missed so much work , how will I be able to take care of it all and should be worrying at all given it is all speculation and I know I am supposed to keep a positive attitude but then that makes you so much more surprised when things don't work out but then I feel like if they don't work out as we hope then I will be the one that failed because I did not keep a positive attitude.
SEE I should not fold cloth.
Thursday, June 02, 2005
The week is not going as planned
Don't you think I would have learned. I would be able to predict a bit. I had no worries about this Delayed Intensification Phase. We had done it before in fact my memory is that is was easy. The Chemo was not bad, the worst part was the Dexemethozone and then that was only 28 doses. 14 one week a week off and the 14 more. Cake. M-E was not very nausiated and she sort of sailed. Okay, well that was the plan. Now I am sitting here with a child that has not been to school for two weeks. She is exhausted, and miserable. Each part of her hurts and she is so emotionally upset about so many things. She cann't make it to school but then she cann't stand being at school. She is so very very worried about life and this summer and next year and......... pick a topic.
Her reserves are spent. We are just done. Sick and tired. That is the only thing I can say. Neither of us want to do this anymore. I want to know waht tomorrow will bring and have some predictablility in my life. I am ready to jump back into the real world. I want to talk with people and feel like there are more topics in the world or questions to answer besides "How are you?" I would like to answer, great, we are busy we have been to a play, we have done some traveling, we......................... are not just boring people that sit at home and try to hold it together. We do more than watch movies or sit on the couch in quiet moments and try to remember our old life. We have hands not ravaged by Purell and eat salad with no fear.
I don't mean to complain but this seems to have gone on forever. I guess I just need to get this out.
Please know I have appreciated every one and everything that everyone has done. We should be back to some sort of normal by the end of summer.
Her reserves are spent. We are just done. Sick and tired. That is the only thing I can say. Neither of us want to do this anymore. I want to know waht tomorrow will bring and have some predictablility in my life. I am ready to jump back into the real world. I want to talk with people and feel like there are more topics in the world or questions to answer besides "How are you?" I would like to answer, great, we are busy we have been to a play, we have done some traveling, we......................... are not just boring people that sit at home and try to hold it together. We do more than watch movies or sit on the couch in quiet moments and try to remember our old life. We have hands not ravaged by Purell and eat salad with no fear.
I don't mean to complain but this seems to have gone on forever. I guess I just need to get this out.
Please know I have appreciated every one and everything that everyone has done. We should be back to some sort of normal by the end of summer.
Saturday, May 28, 2005
I am not sure what day it is.
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.
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.
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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