CDC Symptom Diary Card
Tuesday, May 14, 2013
Wednesday, May 08, 2013
Living With Tumors
I had my Doxil last Tuesday. Somehow the extra dose of anti-nausea meds on Saturday and fluids did not stop yesterday's crash. It was really warm in Seattle, but I was just a mess, really sweating, huge headache, terrible nausea. I was bed bound all day.Thank the Lord my sister woke me up to see how I was doing. I have been trying to re-hydrate and settle out a bit.
So I feel weird right now, but really wanted to share some updates and thoughts....and apologies for the typos....sorry. I am unable to add links right now, will edit and add when I get to a computer.
My latest CT scan shows that tumors are not growing and not shrinking. Since the last CT scan, there are no new tumors. I did up a little chart and compared notes and I think I have 9 tumors with a couple of teeny tiny mm size nodules on the lungs. The tumors are mainly 1-2 cm in diameter. The radiology reports do not follow exact same format, so this information may be off a little, sorry. The report says that I have peritoneal mets, but no new tumors and so far it is stable.
That is great news, but also kind of disheartening. My gynonc is just really going to bat for me, and we are doing several more rounds of Doxil and then maybe switch to Avastin. Avastin would slow or stop the growth of blood vessels that feed tumors. My fatigue is through the roof, still have never ending upper abdominal pain, and the new strategies to help with panic disorder have just begun.
All I want is quality time with those whom I love, a break, a chance for us to play, a leisurely warm ride on a boat, anything. Between myself, mom's heroic efforts to live each day and all the regular stuff families do, plus I do need to work, will we ever have that? Not to be selfish.......cannot talk about that.
if you have cancer and start out on the lower rungs of the money ladder, it is not easier. That is a different discussion..........
I am remaining hopeful about my treatment. My choice is to have hope or not have hope. I choose hope.
My gynonc said that there are people who live with tumors. I can do that.
The trick is if we stop Doxil, what will happen? Will my tumors start growing again and if so how fast? I have been on chemo since Jan/Feb 2012 for my recurrence and the side effects are beginning to take a toll. I am way too immunocompromised to get a stronger chemo or higher dose and my complicated medical condition precludes me from participating in any clinical trials.
My gynonc's nurse said that I have lived longer than expected.....I take that as a positive, the family "tough gene" that says never give up, no matter what. I did not ask her more, maybe next time.
I was finally confirmed two weeks ago, and my sponsor was Sr. Marie Giovanni Paulo. She dedicates her life to God every day. She is a sister of S.O.L.T. The convent is affiliated with St. Alphonsus Parish in Seattle. I feel very blessed. Tonight I requested a lay minister because I sleep too long and just cannot wake up for mass.
With prayer and her guidance, my confirmation name is Denise Raphael.
I mention this because faith knows no bounds and I was led to Sr. Marie for a reason.
World Ovarian Cancer Awareness Day is marked this 8th day of May, 2013.
I am praying that after reading this post that you and your loved ones take a moment to learn more about ovarian cancer.
Since 2009, when I started down this road, the grasses are greener. More people want to solve this deadly problem. The best cure for cancer is prevention, but in our case, we need more than that.....there is no prevention.
Raise awareness but also please donate good money towards research and help your sisters in need.
God Bless you
So I feel weird right now, but really wanted to share some updates and thoughts....and apologies for the typos....sorry. I am unable to add links right now, will edit and add when I get to a computer.
My latest CT scan shows that tumors are not growing and not shrinking. Since the last CT scan, there are no new tumors. I did up a little chart and compared notes and I think I have 9 tumors with a couple of teeny tiny mm size nodules on the lungs. The tumors are mainly 1-2 cm in diameter. The radiology reports do not follow exact same format, so this information may be off a little, sorry. The report says that I have peritoneal mets, but no new tumors and so far it is stable.
That is great news, but also kind of disheartening. My gynonc is just really going to bat for me, and we are doing several more rounds of Doxil and then maybe switch to Avastin. Avastin would slow or stop the growth of blood vessels that feed tumors. My fatigue is through the roof, still have never ending upper abdominal pain, and the new strategies to help with panic disorder have just begun.
All I want is quality time with those whom I love, a break, a chance for us to play, a leisurely warm ride on a boat, anything. Between myself, mom's heroic efforts to live each day and all the regular stuff families do, plus I do need to work, will we ever have that? Not to be selfish.......cannot talk about that.
if you have cancer and start out on the lower rungs of the money ladder, it is not easier. That is a different discussion..........
I am remaining hopeful about my treatment. My choice is to have hope or not have hope. I choose hope.
My gynonc said that there are people who live with tumors. I can do that.
The trick is if we stop Doxil, what will happen? Will my tumors start growing again and if so how fast? I have been on chemo since Jan/Feb 2012 for my recurrence and the side effects are beginning to take a toll. I am way too immunocompromised to get a stronger chemo or higher dose and my complicated medical condition precludes me from participating in any clinical trials.
My gynonc's nurse said that I have lived longer than expected.....I take that as a positive, the family "tough gene" that says never give up, no matter what. I did not ask her more, maybe next time.
I was finally confirmed two weeks ago, and my sponsor was Sr. Marie Giovanni Paulo. She dedicates her life to God every day. She is a sister of S.O.L.T. The convent is affiliated with St. Alphonsus Parish in Seattle. I feel very blessed. Tonight I requested a lay minister because I sleep too long and just cannot wake up for mass.
With prayer and her guidance, my confirmation name is Denise Raphael.
I mention this because faith knows no bounds and I was led to Sr. Marie for a reason.
World Ovarian Cancer Awareness Day is marked this 8th day of May, 2013.
I am praying that after reading this post that you and your loved ones take a moment to learn more about ovarian cancer.
Since 2009, when I started down this road, the grasses are greener. More people want to solve this deadly problem. The best cure for cancer is prevention, but in our case, we need more than that.....there is no prevention.
Raise awareness but also please donate good money towards research and help your sisters in need.
God Bless you
Sunday, April 21, 2013
Look For The Helpers "Mr. Rogers"
A day to remember, when the good people rushed in.
On April 15, 2013 two bombs exploded near the finish line of the 117th running of the Boston Marathon. Four souls, one an 8 year old boy, are in heaven and almost 200 people were badly injured. By the end of the week one of the bombers would be dead and the other in custody, hospitalized with wounds related to his battle with police.
Forces from all over the country joined the Boston Police Department and the FBI to hunt down the sociopaths, make them accountable, and release us to start the healing process. Many of the wounded received war-like injuries, losing arms and legs, sustaining massive head injuries, along with experiencing an unimaginable level of terror.
The bombings were timed so as to happen while many of the runners who represented sweet charities were about to cross the finish line. The runners, their cheerleaders, family members, spectators, friends, business owners and the media had no idea of what would come of this day in April. It was a beautiful day for this most beloved day in Boston.
We know that the world's people ARE good, and that somehow out of all of this torture and wailing, grief and fear, we will be stronger, taller, hopeful and able. God Bless the people of Boston, the runners, the families of those who have died, the first responders, the medical professionals, the media and the unrelenting officers and agents who captured the terrorists.
When the hunt was over, people ran into the streets, cheering for the officers and chanting "USA" over and over. We will never back down, ever.
God Bless America
http://www.whitehouse.gov/blog/2013/04/18/face-evil-boston-has-shown-americans-will-lift-what-good
From the whitehouse.gov webpages:
In the Face of Evil, Boston Has Shown that Americans Will Lift Up What Is Good
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)
President Obama and First Lady Michelle Obama today were at Boston's Cathedral of the Holy Cross to attend Healing Our City, an interfaith service dedicated to those who were gravely wounded or killed in Monday’s bombing near the finish line of the Boston Marathon.
In his remarks, the President paid tribute to those whose lives were taken by the bomb blasts on Boylston Street -- to Krystle Campbell, 29, who was "always smiling." And to Lingzi Lu, a 23-year-old graduate student from China who had come to "experience all this city has to offer." And finally to Martin Richard, the 8-year-old boy from Dorchester whose mother and sister remain in the hospital, fighting to recover from their own injuries. Martin, said President Obama, leaves us with two enduring images, 'forever smiling for his beloved Bruins, and forever expressing a wish he made on a blue poster board: 'No more hurting people. Peace.'"
President Obama also praised the people of Boston, a city both he and the First Lady once called home. Like thousands every year, the two lived there as students -- just one of the many reasons, the President said, that Boston has a hold on so many hearts. "Every fall, you welcome students from all across America and all across the globe, and every spring you graduate them back into the world -- a Boston diaspora that excels in every field of human endeavor," he said. "Year after year, you welcome the greatest talents in the arts and science, research -- you welcome them to your concert halls and your hospitals and your laboratories to exchange ideas and insights that draw this world together."
In fact, the President said, whichever terrorists are behind the attack on Monday picked the wrong city as a target, because Boston will not be terrorized or intimidated:
After the service, President and Mrs. Obama stopped by Boston's Cathedral High School to thank some of Boston's first responders and volunteers for their tireless efforts over the past few days, and then the President visited patients, their families and hospital staff at Massachusetts General Hospital, while the First Lady stopped by Boston Children’s Hospital and Brigham and Women’s Hospital.
You can watch President Obama's remarks below or on YouTube:
On April 15, 2013 two bombs exploded near the finish line of the 117th running of the Boston Marathon. Four souls, one an 8 year old boy, are in heaven and almost 200 people were badly injured. By the end of the week one of the bombers would be dead and the other in custody, hospitalized with wounds related to his battle with police.
Forces from all over the country joined the Boston Police Department and the FBI to hunt down the sociopaths, make them accountable, and release us to start the healing process. Many of the wounded received war-like injuries, losing arms and legs, sustaining massive head injuries, along with experiencing an unimaginable level of terror.
The bombings were timed so as to happen while many of the runners who represented sweet charities were about to cross the finish line. The runners, their cheerleaders, family members, spectators, friends, business owners and the media had no idea of what would come of this day in April. It was a beautiful day for this most beloved day in Boston.
We know that the world's people ARE good, and that somehow out of all of this torture and wailing, grief and fear, we will be stronger, taller, hopeful and able. God Bless the people of Boston, the runners, the families of those who have died, the first responders, the medical professionals, the media and the unrelenting officers and agents who captured the terrorists.
When the hunt was over, people ran into the streets, cheering for the officers and chanting "USA" over and over. We will never back down, ever.
God Bless America
http://www.whitehouse.gov/blog/2013/04/18/face-evil-boston-has-shown-americans-will-lift-what-good
From the whitehouse.gov webpages:
 |
| President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson) |
In the Face of Evil, Boston Has Shown that Americans Will Lift Up What Is Good
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)
President Obama and First Lady Michelle Obama today were at Boston's Cathedral of the Holy Cross to attend Healing Our City, an interfaith service dedicated to those who were gravely wounded or killed in Monday’s bombing near the finish line of the Boston Marathon.
In his remarks, the President paid tribute to those whose lives were taken by the bomb blasts on Boylston Street -- to Krystle Campbell, 29, who was "always smiling." And to Lingzi Lu, a 23-year-old graduate student from China who had come to "experience all this city has to offer." And finally to Martin Richard, the 8-year-old boy from Dorchester whose mother and sister remain in the hospital, fighting to recover from their own injuries. Martin, said President Obama, leaves us with two enduring images, 'forever smiling for his beloved Bruins, and forever expressing a wish he made on a blue poster board: 'No more hurting people. Peace.'"
President Obama also praised the people of Boston, a city both he and the First Lady once called home. Like thousands every year, the two lived there as students -- just one of the many reasons, the President said, that Boston has a hold on so many hearts. "Every fall, you welcome students from all across America and all across the globe, and every spring you graduate them back into the world -- a Boston diaspora that excels in every field of human endeavor," he said. "Year after year, you welcome the greatest talents in the arts and science, research -- you welcome them to your concert halls and your hospitals and your laboratories to exchange ideas and insights that draw this world together."
In fact, the President said, whichever terrorists are behind the attack on Monday picked the wrong city as a target, because Boston will not be terrorized or intimidated:
You’ve shown us, Boston, that in the face of evil, Americans will lift up what’s good. In the face of cruelty, we will choose compassion. In the face of those who would visit death upon innocents, we will choose to save and to comfort and to heal. We’ll choose friendship. We’ll choose love.
Scripture teaches us, “God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” And that’s the spirit you’ve displayed in recent days.
When doctors and nurses, police and firefighters and EMTs and Guardsmen run towards explosions to treat the wounded -- that’s discipline.
When exhausted runners, including our troops and veterans -- who never expected to see such carnage on the streets back home -- become first responders themselves, tending to the injured -- that’s real power.
When Bostonians carry victims in their arms, deliver water and blankets, line up to give blood, open their homes to total strangers, give them rides back to reunite with their families -- that’s love.
That’s the message we send to those who carried this out and anyone who would do harm to our people. Yes, we will find you. And, yes, you will face justice. We will find you. We will hold you accountable. But more than that; our fidelity to our way of life -- to our free and open society -- will only grow stronger. For God has not given us a spirit of fear and timidity, but one of power and love and self-discipline.
You can watch President Obama's remarks below or on YouTube:
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