Well, I've got the results back and they are very GOOD!! I met with Dr. Kellogg today and
he said that the lymph nodes in the neck are basically gone. A large node in the chest area was
3.3 x 1.8 and the SUV (How much it sucks up the glucose that was administered through IV)
was 6.6-6.7 Now it is 2.8 x 1.2 cm and has the SUV of 2.7
So, yea, there is definite improvement. He said to pursue getting the Tykerb Medication in
Mexico and to swim regularly or do light exercize. He wants me to "continue doing the
treatment at the Burzynski Clinic and to keep up the positive attitude" as he said.
On Tuesday, Maria and I are off to see Dr. Burzynski and find out more about my health and to
learn of any changes if any in the medication. Thank you to all who make it possible to recover
from this interesting illness. The Lord is continuing to pour out his many blessings upon me and
to heal me as He promised. I'm trying to do the specific things that He has asked me to do and
He in turn is doing His part. Miracles never cease!
Thursday, June 25, 2009
Friday, June 19, 2009
Yeah! My surgeon is helping me!
Today some good things happened. My surgeon is giving me a prescription for 11 months worth
of tykerb. Now, that's a wonderful thing.
In the past, I haven't been able to get a tykerb prescription outside of Texas.
So now, automatically I can save over $600 a month by buying it here in Arizona.
The sad news is that the doctor down in Mexico (that I hoped to buy it from ) had
to close down his office. But, Maria Montoya, a very good friend of mine with family in Mexico,
is helping me find a place to buy it. So......it's going to work out and hopefully we can get the cost
even cheaper. So that's the exciting news!
I had a great time today. The weather was beautiful and I went for a ride to my sister in law's
house in Queen Creek. Her house is so nice! Then, went a little further and visitied my
daughter in law and her kids. It was just fun! Then, shopping with Christina, out with Larry,
and yea, I kind of over did it but am still doing good! Isn't life wonderful...it's great to be alive.
Sometimes I have heart burn, or my hip hurts from sitting wrong on it at the park, or feeling
a little weak..nothing big really.
It's amazing to be dealing with a major illness and really not have bad side effects.
This is truly a modern day miracle and I am witnessing it first hand. Even
the fact that I can swallow 41 pills a day (that's with the antibiotic that I'm on) and be able
to digest them, is a miracle to me. I don't have the energy that I used to have, but God
is granting me enough energy to do the most important things...and for that I am grateful!
of tykerb. Now, that's a wonderful thing.
In the past, I haven't been able to get a tykerb prescription outside of Texas.
So now, automatically I can save over $600 a month by buying it here in Arizona.
The sad news is that the doctor down in Mexico (that I hoped to buy it from ) had
to close down his office. But, Maria Montoya, a very good friend of mine with family in Mexico,
is helping me find a place to buy it. So......it's going to work out and hopefully we can get the cost
even cheaper. So that's the exciting news!
I had a great time today. The weather was beautiful and I went for a ride to my sister in law's
house in Queen Creek. Her house is so nice! Then, went a little further and visitied my
daughter in law and her kids. It was just fun! Then, shopping with Christina, out with Larry,
and yea, I kind of over did it but am still doing good! Isn't life wonderful...it's great to be alive.
Sometimes I have heart burn, or my hip hurts from sitting wrong on it at the park, or feeling
a little weak..nothing big really.
It's amazing to be dealing with a major illness and really not have bad side effects.
This is truly a modern day miracle and I am witnessing it first hand. Even
the fact that I can swallow 41 pills a day (that's with the antibiotic that I'm on) and be able
to digest them, is a miracle to me. I don't have the energy that I used to have, but God
is granting me enough energy to do the most important things...and for that I am grateful!
Wednesday, June 17, 2009
Doctor visit
I have been on a quest for almost 3 months to get my Tykerb medicine for a better price. It
costs 2,800 a month which is very costly. After exhausting everything I knew to do, I had an
impression to meet with my surgeon who had done the biopsy on my gland and came up with the
first prelimianary diagnosis. So yesterday, I met with him in his office for a special appointment
to get his help. He came into the room and greeted me. I started to refresh his memory about
my diagnosis and what he had told me 3 months ago. Before I could say anything he said, "I
know I told you that we would get it cured, and I apologize. I didn't realize at the time how
agressive the cancer was." I told him that he had been right when he had told me "Don't worry
about it, we're gong to get it cleared up." He corrected me and said, "I said, Don't worry about it,
we're going to get it cured." He apologized deeply and said, I know what I told you and I am
sorry. But I told him... no....he had been right before in what he had told me and that we ARE
going to get it cleared up and that I needed his help in doing it. I went on to tell him about the
Burzynski Clinic and the path that I am taking. He was very pleased and praised me for not
giving up and finding a way to get healed. He seriously sat there and thought for a minute, then
he asked me if I had tried to get it from Canada or Mexico or another country. I said I had but
wasn't able to find a lead and had come upon a brick wall and felt that he was the loose brick to
help get the wall down. He said that he knows where the tykerb is made and had even visited
the plant. It's down in Hermosillo Mexiceo in Sonora. He said there is a doctor down there that
would sell it to me and that I can't get it here in the U.S. because of the FDA having to approve
it. It is not approved for Mantle Cell Lymphoma, only for breast cancer. So he told me to try to
find it on line and call him back in a couple of days. In the meantime he would contact his
elderly mexican mother who knows the name of a doctor down there that could sell it to me.
He asked me to call him in two days and that he would talk to me. The Spirit was very strong
in the room thanks to many prayers. The doctor was moved with compassion to help me get
my Tykerb medicine for a better price, and I was thrilled. So, I came home and looked on the
internet and still couldn't find anyone online down in Hermosillo that sold it. So I will have to
wait a couple of days. I'm excited to see how this will all work out!
costs 2,800 a month which is very costly. After exhausting everything I knew to do, I had an
impression to meet with my surgeon who had done the biopsy on my gland and came up with the
first prelimianary diagnosis. So yesterday, I met with him in his office for a special appointment
to get his help. He came into the room and greeted me. I started to refresh his memory about
my diagnosis and what he had told me 3 months ago. Before I could say anything he said, "I
know I told you that we would get it cured, and I apologize. I didn't realize at the time how
agressive the cancer was." I told him that he had been right when he had told me "Don't worry
about it, we're gong to get it cleared up." He corrected me and said, "I said, Don't worry about it,
we're going to get it cured." He apologized deeply and said, I know what I told you and I am
sorry. But I told him... no....he had been right before in what he had told me and that we ARE
going to get it cleared up and that I needed his help in doing it. I went on to tell him about the
Burzynski Clinic and the path that I am taking. He was very pleased and praised me for not
giving up and finding a way to get healed. He seriously sat there and thought for a minute, then
he asked me if I had tried to get it from Canada or Mexico or another country. I said I had but
wasn't able to find a lead and had come upon a brick wall and felt that he was the loose brick to
help get the wall down. He said that he knows where the tykerb is made and had even visited
the plant. It's down in Hermosillo Mexiceo in Sonora. He said there is a doctor down there that
would sell it to me and that I can't get it here in the U.S. because of the FDA having to approve
it. It is not approved for Mantle Cell Lymphoma, only for breast cancer. So he told me to try to
find it on line and call him back in a couple of days. In the meantime he would contact his
elderly mexican mother who knows the name of a doctor down there that could sell it to me.
He asked me to call him in two days and that he would talk to me. The Spirit was very strong
in the room thanks to many prayers. The doctor was moved with compassion to help me get
my Tykerb medicine for a better price, and I was thrilled. So, I came home and looked on the
internet and still couldn't find anyone online down in Hermosillo that sold it. So I will have to
wait a couple of days. I'm excited to see how this will all work out!
Monday, June 15, 2009
Back to normal?
I feel so amazingly great... that I am just praying that it lasts. Today I made molases cookies
(honey and brown flour), 4 loaves of banana bread (same way-honey and WW flour), a delicious
brown rice dish...yum! and what else? I can't remember....oh yes! Fried egg plant. It was so
good! I got this huge purple eggplant from the Stradlings and they told me how to cook it. You
slice it up and dip it in egg batter and then into brown flour and cornmeal. I fried it in coconut
oil. Everyone loved it. Also...my mind is working, which is odd. I just have lots of energy and
feel great. I'm sure that I am getting well. Tomorrow I can't have any fruit or carbs as on
Wednesday I will be having another Pet Scan. Then blood work the next few days. At the end of
the month it's off to Houston, Texas to see the doctors at the Burzynski Clinic. The good thing is
that tickets are only $49 one way on Southwest Airline. (For your information they have the
special on for the summer to many locations...but you must travel on Tuesday or Wednesday to
get the deal)
Thank you all for your prayers and love. God is surely hearing all of us
and I am being healed. Let's pray it continues without too many set backs. By the way, if any
one is reading this then you probably care about me and I want you to know that you are
wonderful and may the Lord bless you for your love and kindness for me and others!!!
(honey and brown flour), 4 loaves of banana bread (same way-honey and WW flour), a delicious
brown rice dish...yum! and what else? I can't remember....oh yes! Fried egg plant. It was so
good! I got this huge purple eggplant from the Stradlings and they told me how to cook it. You
slice it up and dip it in egg batter and then into brown flour and cornmeal. I fried it in coconut
oil. Everyone loved it. Also...my mind is working, which is odd. I just have lots of energy and
feel great. I'm sure that I am getting well. Tomorrow I can't have any fruit or carbs as on
Wednesday I will be having another Pet Scan. Then blood work the next few days. At the end of
the month it's off to Houston, Texas to see the doctors at the Burzynski Clinic. The good thing is
that tickets are only $49 one way on Southwest Airline. (For your information they have the
special on for the summer to many locations...but you must travel on Tuesday or Wednesday to
get the deal)
Thank you all for your prayers and love. God is surely hearing all of us
and I am being healed. Let's pray it continues without too many set backs. By the way, if any
one is reading this then you probably care about me and I want you to know that you are
wonderful and may the Lord bless you for your love and kindness for me and others!!!
Friday, June 12, 2009
Life is Good!
I was just thinking this morning about how blessed I am and how many reasons there are to
rejoice. Life is so interesting with it's many twists and turns, but our trials bring us closer to
God and help us to grow and progress. I have been blessed with a wonderful family. Larry
is so good to me and is very helpful. Our children bring tremendous JOY and we are very
proud of them. They are doing a great job raising their own children as well.
A couple of days ago, Lily (our oldest grandchild-7 years old now) came over and she wanted
to sew. We found an old nightgown and cut it down and together we made a nightgown for her.
It was so fun....quite tiring....and the house got kind of messy. But, it was a great day. Next,
I plan to do something with Emma...and then with Rebecca. So, it will be a fun summer.
I LOVE being a grandmother.
So, tonight is the beginning of our Manning Family Reunion. This year, we are staying in the
valley and just taking it easy. Aaron and Andrea are in charge of tonight's kick off event. We are
going to their time share Marriot Resort in Scottsdale for a barbeque and swimming. Then
in the morning, everyone will come to our house for a pancake and bacon breakfast. It's a
pajama party and even GrM and GrP Manning are coming in their PJ's. We will be doing
3 stations--a family history game, a puppet show, and a care package for our son Thomas who
is serving a mission in Washington. After our home, we will go to Joseph and Christina's for a
mid morning snack, then to Bryan and Maria's for lunch and a craft, then to Jonathan and
Carrie's house for dinner, family video and a treasure hunt. After all that we will end up
at the Memorial Service for my neice's husband Doogie who recently past away. So....it
will be wonderful being together. I love my family!
About my health....it is good....it's improving...but at the same time, because of the staph
infection, I am on this nasty antibiotic called clindamycin that causes the runs. (if you know what
I mean. So, I am staying very close to the bathroom) Not fun.
rejoice. Life is so interesting with it's many twists and turns, but our trials bring us closer to
God and help us to grow and progress. I have been blessed with a wonderful family. Larry
is so good to me and is very helpful. Our children bring tremendous JOY and we are very
proud of them. They are doing a great job raising their own children as well.
A couple of days ago, Lily (our oldest grandchild-7 years old now) came over and she wanted
to sew. We found an old nightgown and cut it down and together we made a nightgown for her.
It was so fun....quite tiring....and the house got kind of messy. But, it was a great day. Next,
I plan to do something with Emma...and then with Rebecca. So, it will be a fun summer.
I LOVE being a grandmother.
So, tonight is the beginning of our Manning Family Reunion. This year, we are staying in the
valley and just taking it easy. Aaron and Andrea are in charge of tonight's kick off event. We are
going to their time share Marriot Resort in Scottsdale for a barbeque and swimming. Then
in the morning, everyone will come to our house for a pancake and bacon breakfast. It's a
pajama party and even GrM and GrP Manning are coming in their PJ's. We will be doing
3 stations--a family history game, a puppet show, and a care package for our son Thomas who
is serving a mission in Washington. After our home, we will go to Joseph and Christina's for a
mid morning snack, then to Bryan and Maria's for lunch and a craft, then to Jonathan and
Carrie's house for dinner, family video and a treasure hunt. After all that we will end up
at the Memorial Service for my neice's husband Doogie who recently past away. So....it
will be wonderful being together. I love my family!
About my health....it is good....it's improving...but at the same time, because of the staph
infection, I am on this nasty antibiotic called clindamycin that causes the runs. (if you know what
I mean. So, I am staying very close to the bathroom) Not fun.
Saturday, June 6, 2009
What a week!
It started off last Sunday when my ear hurt so badly that I had to go into Urgent Care.
The doctor said I had staph inside of the earlobe and he put me on a high dosage of keflex and
said to keep the earlobe warm throughout the day to help with circulation. So there I was, sick
with a warm pack on my ear and Larry lay on the couch across from me with his nose all
bandaged up from his cancer surgery. We were kind of a mess. We laughed about it though.
Anyway, I had picked up staph from taking a warm bath after being a the two different hospitals
for the last couple of weeks, while visiting Larry.. The doctor said that it wasn't contagious in a
swimming pool and that I couldn't have gotten it there. So...it's doing much better and I am
very glad. Also, Larry's nose is healing up well and he got his stitches out. His stomach has
also been healing up better, although for the last couple of weeks it was a mess...oh well.
Last night, it was soooo wonderful to go to the Italian Dinner that was put on to raise money
for my medicines that aren't covered by insurance. Oh, it was wonderful! At least 200 people
were there and it was like a reception, with an orchestra, beautiful tables with candles and
delicious food....it was so fun! I just wanted to visit with everyone. Aaron was the auctioneer
and he did a fabulous job and was very entertaining. Andrea was the wonderful organizer
behind it all with her dear mother Lisa and her crew in charge of the dinner and setting up
everything. Maria was doing a little of everything and did soo much. Joseph had made his
whistles and sold them. Carrie had put together a video but they didn't have time to show it.
I think my favorite part was when my children stood up and sang one of my favorite songs
"Top of The World". I just loved it...and smiled as they sang. It touched my heart!
If anyone is reading this blog that helped in anyway or bought something or donated money I
want you to know how much I truly appreciate your support! They brought in about $7,000,
which is way more than was expected. The goal was $5,800....so I feel at peace knowing that
my pills are covered for awhile. In the mean time I have a plan to try to get my tykerb pills
donated. So..I'm continuing to work on that little project. I am happy, and am continuing to
get well...it's exciting to be a part of a modern day miracle. May the Lord bless each of you that
may be reading this blog with your own challenges. The Lord blesses us according to our
desires, faith, and God's will.
The doctor said I had staph inside of the earlobe and he put me on a high dosage of keflex and
said to keep the earlobe warm throughout the day to help with circulation. So there I was, sick
with a warm pack on my ear and Larry lay on the couch across from me with his nose all
bandaged up from his cancer surgery. We were kind of a mess. We laughed about it though.
Anyway, I had picked up staph from taking a warm bath after being a the two different hospitals
for the last couple of weeks, while visiting Larry.. The doctor said that it wasn't contagious in a
swimming pool and that I couldn't have gotten it there. So...it's doing much better and I am
very glad. Also, Larry's nose is healing up well and he got his stitches out. His stomach has
also been healing up better, although for the last couple of weeks it was a mess...oh well.
Last night, it was soooo wonderful to go to the Italian Dinner that was put on to raise money
for my medicines that aren't covered by insurance. Oh, it was wonderful! At least 200 people
were there and it was like a reception, with an orchestra, beautiful tables with candles and
delicious food....it was so fun! I just wanted to visit with everyone. Aaron was the auctioneer
and he did a fabulous job and was very entertaining. Andrea was the wonderful organizer
behind it all with her dear mother Lisa and her crew in charge of the dinner and setting up
everything. Maria was doing a little of everything and did soo much. Joseph had made his
whistles and sold them. Carrie had put together a video but they didn't have time to show it.
I think my favorite part was when my children stood up and sang one of my favorite songs
"Top of The World". I just loved it...and smiled as they sang. It touched my heart!
If anyone is reading this blog that helped in anyway or bought something or donated money I
want you to know how much I truly appreciate your support! They brought in about $7,000,
which is way more than was expected. The goal was $5,800....so I feel at peace knowing that
my pills are covered for awhile. In the mean time I have a plan to try to get my tykerb pills
donated. So..I'm continuing to work on that little project. I am happy, and am continuing to
get well...it's exciting to be a part of a modern day miracle. May the Lord bless each of you that
may be reading this blog with your own challenges. The Lord blesses us according to our
desires, faith, and God's will.
Wednesday, June 3, 2009
You're Invited This Friday Night!
Please join us for an evening of food, fun, good deals, and a great cause. Most of the donations that we have gathered are activites that most people will be doing anyway. See the post below for the full list of auction items. Hopefully you have recognized some businesses that you are interested in visiting anyway in the coming months and year. Perhaps you have an anniversary or birthday coming up that these items could be used for. These items could make great gifts for a grandchild, brother, sister, nephew, niece, cousin, etc.
I think that all who come will be very pleased when they leave. Even if no items are purchased, come for a fun date night. Where else can you get a dinner plus entertainment for only $7/person ($10 at the door)? All proceeds go directly to benefit Margaret Manning's medical costs. Please come if you possibly can!!!
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