I am still having abdominal pain from my surgery in July of 2009. Today is a bad day. I have been battling nausea all weak, along with fatigue. I am the queen of couch potatoes. I just don't want to do anything.
I go again for chemo tomorrow, scheduled to receive Taxol. I have to admit I am weary of the chemo and pain. I am tired of micro-managing my diet and not being able to eat certain foods. The thing is though that my mom suffers more. Her diabetes is so fragile, yesterday all she could eat was a bowl of soup because her blood sugar levels stayed high. This is despite her giving herself more insulin. I feel like she is starving sometimes and it pains me to see her suffer.
It doesn't help that seemingly every TV show, commercial and event is centered around food. Food is an obsession in this country. In Haiti, people are becoming so weak from lack of food that they are not able to carry their own bags of rice and beans. Juxtaposed against the horrific scenes unfolding on the island are fast food bargains, restaurant commercials, and grocery advertisements. Pizza commercials reign.
I pray every day for the people in Haiti, I pray for my mom to be able to just eat like a normal person and have a meal. I pray my sister can do the same. I just want my pain to go away. I am tired.
My chemo will start wrapping up towards the end of February, and that will make a grand total of about 6 months of self poisoning to rid myself of any traces of ovarian cancer. I am still searching for my calling and praying for those that I love to be safe, healthy and happy. We all deserve a life fulfilled. We need to contribute. We need to be needed, that is our nature.
Love,
Denise
CDC Symptom Diary Card
Thursday, January 28, 2010
Tuesday, January 19, 2010
Inspired by the people of Haiti
Today I am thinking about the horrific plight of the survivors in Haiti. Consumed with their struggle and the struggle of their saviors. Frustrated by the inherent beaurocracy that comes along with large organizations spending too much time planning and assessing and not enough time doing. I know that they are doing as best they can, but when I heard yesterday that yet two more planes from Doctors Without Borders had been diverted or refused access to the airport in Port-au-Prince, I felt so so sad. Reporters are stepping in to hold officials accountable, but there really is no responsible body of government. The Haitian government is incapable and needs help to operate. I pray all day that the supply lines are freed and that effective distribution and delivery of aid and medical help becomes a reality to help the people of Haiti. We have a long way to go.
So as I get up and manage each day, dealing with the anxiety of my upcoming hospitalization, I am inspired to be better, do better, live better and cope. The people of Haiti are only surviving because of their sheer will and faith in God. We hear them singing prayer songs in the background as newscasters try to somehow paint a picture of the horror on the ground. Their songs give me hope. May we all continue to pray for the people of Haiti. They are going to need our prayers for a long time to come. To the people of Haiti, I love you.
So as I get up and manage each day, dealing with the anxiety of my upcoming hospitalization, I am inspired to be better, do better, live better and cope. The people of Haiti are only surviving because of their sheer will and faith in God. We hear them singing prayer songs in the background as newscasters try to somehow paint a picture of the horror on the ground. Their songs give me hope. May we all continue to pray for the people of Haiti. They are going to need our prayers for a long time to come. To the people of Haiti, I love you.
Saturday, January 16, 2010
More on Haiti
Today we finally see trickles of support in the form of food and water being sparsely distributed to the poor souls of Haiti. The people of Haiti have been their own rescue workers and heroes. It was tragic to see a group of doctors pull away from their newly established tent to leave CNN's Dr. Sanjay Gupta hatted with servicing the medical needs of almost 30 severly wounded Haitians. Why do these atrocities happen? The desire to "organize" has almost crippled the most essential needs to get immediate help to the people. But, I am not there. I am here. All of the world is watching, praying for a path to open up for the flood of international humanitarian aid. I must restate my praise to God for granting me life and for the lives and safety of all my loved ones and friends. Each day I pray. May we all continue to pray for the safety and well being of our beloved Haitians and for the speedy distribution and execution of international aid efforts. God Bless the people of Haiti.
Thursday, January 14, 2010
We cry for Haiti
A few days ago I had planned on filling you in on my progress, then the devastating quake hit Haiti. If you are like me, you have been glued to the internet or television, praying for relief to the poor people of Haiti. It is surreal, heartbreaking, overwehlming, tragic. We are helpless save for a small donation to the red cross or other charitable organization.
What is more tragic is the realization for our saviors that the harbor is damaged, and the airport can only manage minimal air traffic. We need thousands of small boats to rush to shore with doctors, rescue teams, food, water, medicine and shelter supplies now. Distributing aid is a logistical nightmare and our best seems incapacitated to do anything. Haiti's President is homeless, has no post from which to command and the United Nations building is collapsed. Nobody is really in charge. The people are crying, screaming, suffering, bleeding and dying as I write. All nations need access to help the Haitian people, this is no time for politics or restrictions.
I saw on CNN how one doctor flew small plane to Haiti, rescued several people, provided immediate medical aid and flew them back to Miami. One doctor! Amazing. I know that some rescue efforts have started, supplies are arriving, and possibly hundreds or thousands of people are "on deck" to go to Haiti, but are being tangled in the beaucracy of managing the damaged points of entry created by the quake. Is there a way to launch hundreds or thousands of smaller boats that encroach upon the beaches to deliver the doctors, rescuers and much needed supplies now?
I am already probably clinically depressed and simply watching the coverage of the quake is probably not good for me but this is what is actually happening with me. I see the horror and feel eternally grateful for my loved ones, my meals, my shower, my clothers, my bed, my toothbrush, my medication, my doctors, my friends, my shelter, my drink. I feel so grateful and yet again am so so challenged to find a way to be a positive value to the world.
I struggle with manipulative insurance agents, criminal ex-landlords, fatigue beyond measure, depression, fighting with the psychiatric intern and all of these struggles are so so trivial in comparison to the plight of the people in Haiti.
Today I vow to be a little happier and more appreciative and pray that I can find my calling so that my life will not be useless to others. In the mean time, like you, I will be anxiously watching the news as the tragedy unfolds and praying somehow we are able to provide real relief literally in minutes, hours and days. There is no more time. They are dying. God Help Us All and reach down to the Haitians and their rescuers to lift them on your wings to safety.
Love,
Denise
What is more tragic is the realization for our saviors that the harbor is damaged, and the airport can only manage minimal air traffic. We need thousands of small boats to rush to shore with doctors, rescue teams, food, water, medicine and shelter supplies now. Distributing aid is a logistical nightmare and our best seems incapacitated to do anything. Haiti's President is homeless, has no post from which to command and the United Nations building is collapsed. Nobody is really in charge. The people are crying, screaming, suffering, bleeding and dying as I write. All nations need access to help the Haitian people, this is no time for politics or restrictions.
I saw on CNN how one doctor flew small plane to Haiti, rescued several people, provided immediate medical aid and flew them back to Miami. One doctor! Amazing. I know that some rescue efforts have started, supplies are arriving, and possibly hundreds or thousands of people are "on deck" to go to Haiti, but are being tangled in the beaucracy of managing the damaged points of entry created by the quake. Is there a way to launch hundreds or thousands of smaller boats that encroach upon the beaches to deliver the doctors, rescuers and much needed supplies now?
I am already probably clinically depressed and simply watching the coverage of the quake is probably not good for me but this is what is actually happening with me. I see the horror and feel eternally grateful for my loved ones, my meals, my shower, my clothers, my bed, my toothbrush, my medication, my doctors, my friends, my shelter, my drink. I feel so grateful and yet again am so so challenged to find a way to be a positive value to the world.
I struggle with manipulative insurance agents, criminal ex-landlords, fatigue beyond measure, depression, fighting with the psychiatric intern and all of these struggles are so so trivial in comparison to the plight of the people in Haiti.
Today I vow to be a little happier and more appreciative and pray that I can find my calling so that my life will not be useless to others. In the mean time, like you, I will be anxiously watching the news as the tragedy unfolds and praying somehow we are able to provide real relief literally in minutes, hours and days. There is no more time. They are dying. God Help Us All and reach down to the Haitians and their rescuers to lift them on your wings to safety.
Love,
Denise
Thursday, December 31, 2009
HAPPY NEW YEAR
Happy New Year Everyone!
I get to spend my first day of 2010 in the hospital getting chemo. I am grateful for the medication and only pray that I can tolerate it. The cumulative effect worries me but the nurse assured me the additional anti-nausea med will make it bearable.
As for resolutions, my only resolution is to find more grace and forgiveness in my heart. It takes too much energy to be angry and my spiritual development is stagnated by my anger. I can't guarantee that I will be 100% right away, but I promise God and all of you I will put forth my best effort to do so. My previous doctors probably did the best they could, given who they are. I will find a way to move forward in 2010.
My prayers are with each of you in that the pains of 2009 be transformed into new hope, embracing a new opportunity for joy and serenity.
Happy New Year.
Love,
Denise
I get to spend my first day of 2010 in the hospital getting chemo. I am grateful for the medication and only pray that I can tolerate it. The cumulative effect worries me but the nurse assured me the additional anti-nausea med will make it bearable.
As for resolutions, my only resolution is to find more grace and forgiveness in my heart. It takes too much energy to be angry and my spiritual development is stagnated by my anger. I can't guarantee that I will be 100% right away, but I promise God and all of you I will put forth my best effort to do so. My previous doctors probably did the best they could, given who they are. I will find a way to move forward in 2010.
My prayers are with each of you in that the pains of 2009 be transformed into new hope, embracing a new opportunity for joy and serenity.
Happy New Year.
Love,
Denise
Tuesday, December 29, 2009
Visit with psychiatrist
Hello All,
Yesterday I had the pleasure, or so I think, to visit with the psychiatric clinic intake department personnel. I say personnel because it was an intern who had to be rescued by an experienced psychiatrist (shrink). The visit was bittersweet and emotional. I was angry and grateful at the same time.
It started out with her telling me the intake process and that she was an intern. She was as nice as can be and she offered me the opportunity to do the narrative or questionaire first, so I chose to do the narrative first. I explained my situation and the anger associated with having had incompetent doctors who missed my diagnosis. I spoke of my fears of forever living in poverty once I start to heal. I asked about prognosis, why is there no prognosis. I expressed frustrations about my treatment plan not belonging to me but rather a product of "research" and sort of "off the rack" generalized plan.
About midway through the narrative another shrink came in and just sat down. It was odd, maybe he came in because my voice was loud and carrying through the halls. I had already gotten frustrated at the intern because she asked about my previous occupation. I was upset because she said "there's nothing wrong with being a secretary". I told her not to patronize me and let her know I had already lost one career due to a disability and now I have no job to return to after all this is done. The worst of it being I have no clue how to prepare or create a purpose because nobody has told me how long I'll be here. It could be six months, six years, who knows. I got snappy and said if I were still an OT, I'd be earning 75K per year.
Well then we were talking about Gilda's Club, which seems like a great resource for women with Ovarian Cancer. My problem now though is there intake meetings are all early in the morning and I am still not able to be anywhere before noon. The guy said "oh that's because you work". I got very angry at him and said "if you aren't going to pay attention, don't sit here". Well, I was harsh, but I don't like it when health professionals make assumptions. Then the intern said I don't like it when you treat me that way. I said I wasn 't speaking to her and for her not to argue with me.
After about 5 minutes of arguing with the intern and shrink about how to treat a patient who is angry, we eventually moved on and it's all better. They want to give up on you quickly. If you aren't all wrapped up in a neat little package with a big red ribbon on top, they want to throw you away. I need help.
I will discuss my past psychological trials and tribulations in a future blog. This is not the first time I have needed psychological support (surprise surprise). Being a disabled person can take a toll on your emotional health. But for now let's suffice to say that the team will check with my insurance to see if it covers "talk therapy". I am not a good candidate for psychiatric medications.
In spite of the argument, I feel good about seeking emotional support. I think I really need to handle my anger about my cancer and the previous medical yahoos that ignored me. I desperately want to discover my life's purpose. I think sometimes I could become an advocate and raise awareness for Ovarian Cancer, but that needs to translate into a JOB. I want to work from home.
The shrinks advised me not to think too far ahead and simply try to live each day one day at a time. I am trying to do that, I really am. I just get so worried.
I also today agreed to do another round of Cisplatin and Taxol in the hospital. I go in on New Years Day. I spoke with Dr. Gray's nurse. I told her how miserable I was and expressed the pain associated with the nausea was overwhelming. She said they will give me an additional drug for nausea and hopefully I will be better able to manage the side effects. The doctor is not comfortable stopping platinum drugs yet because according to "research" I have not had enough platinum drug therapy.
I am a small person, I just wish they could customize my treatment plan a little better.
Anyway, if I still have a terrible experience after adding the additional medication, then they may consider discontinuing platinum drug therapy. We'll see. I pray the additional anti-nausea med will do the trick. I really do hope it works.
Love you all,
Denise
Yesterday I had the pleasure, or so I think, to visit with the psychiatric clinic intake department personnel. I say personnel because it was an intern who had to be rescued by an experienced psychiatrist (shrink). The visit was bittersweet and emotional. I was angry and grateful at the same time.
It started out with her telling me the intake process and that she was an intern. She was as nice as can be and she offered me the opportunity to do the narrative or questionaire first, so I chose to do the narrative first. I explained my situation and the anger associated with having had incompetent doctors who missed my diagnosis. I spoke of my fears of forever living in poverty once I start to heal. I asked about prognosis, why is there no prognosis. I expressed frustrations about my treatment plan not belonging to me but rather a product of "research" and sort of "off the rack" generalized plan.
About midway through the narrative another shrink came in and just sat down. It was odd, maybe he came in because my voice was loud and carrying through the halls. I had already gotten frustrated at the intern because she asked about my previous occupation. I was upset because she said "there's nothing wrong with being a secretary". I told her not to patronize me and let her know I had already lost one career due to a disability and now I have no job to return to after all this is done. The worst of it being I have no clue how to prepare or create a purpose because nobody has told me how long I'll be here. It could be six months, six years, who knows. I got snappy and said if I were still an OT, I'd be earning 75K per year.
Well then we were talking about Gilda's Club, which seems like a great resource for women with Ovarian Cancer. My problem now though is there intake meetings are all early in the morning and I am still not able to be anywhere before noon. The guy said "oh that's because you work". I got very angry at him and said "if you aren't going to pay attention, don't sit here". Well, I was harsh, but I don't like it when health professionals make assumptions. Then the intern said I don't like it when you treat me that way. I said I wasn 't speaking to her and for her not to argue with me.
After about 5 minutes of arguing with the intern and shrink about how to treat a patient who is angry, we eventually moved on and it's all better. They want to give up on you quickly. If you aren't all wrapped up in a neat little package with a big red ribbon on top, they want to throw you away. I need help.
I will discuss my past psychological trials and tribulations in a future blog. This is not the first time I have needed psychological support (surprise surprise). Being a disabled person can take a toll on your emotional health. But for now let's suffice to say that the team will check with my insurance to see if it covers "talk therapy". I am not a good candidate for psychiatric medications.
In spite of the argument, I feel good about seeking emotional support. I think I really need to handle my anger about my cancer and the previous medical yahoos that ignored me. I desperately want to discover my life's purpose. I think sometimes I could become an advocate and raise awareness for Ovarian Cancer, but that needs to translate into a JOB. I want to work from home.
The shrinks advised me not to think too far ahead and simply try to live each day one day at a time. I am trying to do that, I really am. I just get so worried.
I also today agreed to do another round of Cisplatin and Taxol in the hospital. I go in on New Years Day. I spoke with Dr. Gray's nurse. I told her how miserable I was and expressed the pain associated with the nausea was overwhelming. She said they will give me an additional drug for nausea and hopefully I will be better able to manage the side effects. The doctor is not comfortable stopping platinum drugs yet because according to "research" I have not had enough platinum drug therapy.
I am a small person, I just wish they could customize my treatment plan a little better.
Anyway, if I still have a terrible experience after adding the additional medication, then they may consider discontinuing platinum drug therapy. We'll see. I pray the additional anti-nausea med will do the trick. I really do hope it works.
Love you all,
Denise
Monday, December 21, 2009
Merry Christmas
We are approaching the most holy day of the year, the birth of our Lord Jesus Christ. It is a time for celebration. I feel inadequate and undeserving, truly. I will miss Christmas mass for the first time in years and it makes me cry. I simply cannot tolerate a midnight mass and 9am Christmas mass will be too crowded for me. I pray that God understands. Maybe something will change and I will be able to attend.
I have not been writing because the blast of Cisplatin, combined with a poorly timed dose of Taxol, wiped me out. For days I was so full of nausea and severe fatigue. With Christmas to prepare for, the one grace is that I have no chemo this week. I feel scattered today, my words do not flow in any organized fashion.
I want to stay focused on what gives me gratitude, such as the kindess of our neighbor who brought over spaghetti. My home minister Patricia who is so dedicated, brings me Holy Communion every week. My family my family my family. Not enough can be said to honor the dedication and sacrifice my mother, Mandy, Patrick and their children have made to accomodate my hospitalizations and chemo schedule. I love you all so much.
This Christmas I will be rejoicing in the celebration of the birth of Jesus, and praying that we all remember that Jesus is in each of us. With that I will pray that this new season will bring all of us to love one another more deeply, treat each other with more kindness, and have more compassion for our fellow human beings. I will be thanking God for I have been the recipient of such grace over and over again from friends, strangers and my loving family. I am so blessed and fortunate. I wish all of you a very blessed holy Merry Christmas this year. Love, Denise
I have not been writing because the blast of Cisplatin, combined with a poorly timed dose of Taxol, wiped me out. For days I was so full of nausea and severe fatigue. With Christmas to prepare for, the one grace is that I have no chemo this week. I feel scattered today, my words do not flow in any organized fashion.
I want to stay focused on what gives me gratitude, such as the kindess of our neighbor who brought over spaghetti. My home minister Patricia who is so dedicated, brings me Holy Communion every week. My family my family my family. Not enough can be said to honor the dedication and sacrifice my mother, Mandy, Patrick and their children have made to accomodate my hospitalizations and chemo schedule. I love you all so much.
This Christmas I will be rejoicing in the celebration of the birth of Jesus, and praying that we all remember that Jesus is in each of us. With that I will pray that this new season will bring all of us to love one another more deeply, treat each other with more kindness, and have more compassion for our fellow human beings. I will be thanking God for I have been the recipient of such grace over and over again from friends, strangers and my loving family. I am so blessed and fortunate. I wish all of you a very blessed holy Merry Christmas this year. Love, Denise
Friday, December 11, 2009
Thank you God
I just heard good news about Uncle Rich. His myeloma is localized, and has not spread to other tissue. Thank you God for taking care of him. Now he still needs radiation, a grueling three week schedule in January, but there is now new hope. He will get to enjoy time with family and friends for the holidays. Thank you all for your prayers for him, thank you Lord for your healing.
Now I request prayers for my dear mom. She has had Type I diabetes since age 23, for 40 years. She has been on an insulin pump for 10 years. Now her pump is causing her pain and she is running out of "pain free" space on her abdomen to place the pump needle. She needs to see a diabetic educator to see if they will be able to help her better use the pump, but my mom is doubtful any educator will be able to solve this problem.
My mother provides me food, shelter, daily support and love and acts with grace each day to help me heal. She is under a lot of pressure though and deeply misses her friends and social life. Her diabetes has made it hard for her to be free to do what she wants to do on her timeframe. Her pump is the only device that can control her blood sugar levels. I pray deeply for her to find happiness and healing with her pump. Her pump is her lifesaver and it needs to work.
Please help me pray for my mom.
Love,
Denise
Now I request prayers for my dear mom. She has had Type I diabetes since age 23, for 40 years. She has been on an insulin pump for 10 years. Now her pump is causing her pain and she is running out of "pain free" space on her abdomen to place the pump needle. She needs to see a diabetic educator to see if they will be able to help her better use the pump, but my mom is doubtful any educator will be able to solve this problem.
My mother provides me food, shelter, daily support and love and acts with grace each day to help me heal. She is under a lot of pressure though and deeply misses her friends and social life. Her diabetes has made it hard for her to be free to do what she wants to do on her timeframe. Her pump is the only device that can control her blood sugar levels. I pray deeply for her to find happiness and healing with her pump. Her pump is her lifesaver and it needs to work.
Please help me pray for my mom.
Love,
Denise
Friday, December 04, 2009
prayer for Uncle Rich
Yesterday we got bad news, my Uncle Rich has myeloma. He has had a bump on his sternum for over a year and was unfortunately diagnosed with myeloma yesterday. He will need a bone marrow test next week to determine the stage of illness. This is so unfortunate, so sad. He works so hard. His doctors had told him he had ankylosing spondylitis, and they now seem to be incorrect. I am hoping that all my friends will pray for Uncle Rich and Aunt Debbie, and their children in this time of need. We all remain hopeful and positive.
Like me, he could benefit by receiving top notch surgery or radiation or chemo, and clear his body of this illness. I pray for them and for their doctors, that they are able to quickly and thoroughly treat his myeloma. Love you guys.
On a side note, due to my allergic reaction to carboplatin, I now will need to receive a new platinum drug in hospital next week. My doctor wants me to take cisplatin, and it requires being hooked up to IV fluids for 4 hours to prepare the kidneys. The cisplatin causes kidney failure unless you are thoroughly hydrated. My doctor said that she didn't want to chance any further allergic reactions to carboplatin, because it could be a deadly reaction the next time around. Scary.
The other down side of cisplatin is that it causes more nausea, so I am definitely not looking forward to that. I plan to psyche myself up and mentally prepare as much as possible. I am sure that the anti-nausea meds will do as much as possible and I will just pray that I don't have too much of a reaction. I am very disappointed that I have to be hospitalized for this upcoming chemo treatment. It will be more expensive and just the nature of the treatment is intimidating. I do know that the U of W hospital is very nice, staff very professional and that I will be made as comfortable as possible. Bless my sister Mandy, for she will stay with me.
Love you all,
Denise
Like me, he could benefit by receiving top notch surgery or radiation or chemo, and clear his body of this illness. I pray for them and for their doctors, that they are able to quickly and thoroughly treat his myeloma. Love you guys.
On a side note, due to my allergic reaction to carboplatin, I now will need to receive a new platinum drug in hospital next week. My doctor wants me to take cisplatin, and it requires being hooked up to IV fluids for 4 hours to prepare the kidneys. The cisplatin causes kidney failure unless you are thoroughly hydrated. My doctor said that she didn't want to chance any further allergic reactions to carboplatin, because it could be a deadly reaction the next time around. Scary.
The other down side of cisplatin is that it causes more nausea, so I am definitely not looking forward to that. I plan to psyche myself up and mentally prepare as much as possible. I am sure that the anti-nausea meds will do as much as possible and I will just pray that I don't have too much of a reaction. I am very disappointed that I have to be hospitalized for this upcoming chemo treatment. It will be more expensive and just the nature of the treatment is intimidating. I do know that the U of W hospital is very nice, staff very professional and that I will be made as comfortable as possible. Bless my sister Mandy, for she will stay with me.
Love you all,
Denise
Tuesday, December 01, 2009
Hospitalization
I had to be hospitalized due to high fever on Saturday. My fever of 104 was alarming, and although it started to reduce after taking two tylenol, the doctor on call insisted that I go to the hospital. I was admitted to University of Washington so that Dr. Goff of SCCA could monitor me. The staff of nurses and physicians were so professional. The best part was my sister Mandy stayed the night to watch over me, like the angel she is.
They had trouble drawing blood from my port, so consequently had to stick me in the arm three times, but that was OK. I received two rounds of antibiotics and IV fluids for dehydration. The last time I had chemo I had a fever too.
Towards the end of this round of chemo on Friday, I had a reaction to the carboplatin. My hands itched and I got red spots on my face. I received benadryl, but later that night I had chills so bad I had to sleep with a heating pad. Then my fever of course spiked. I really didn't want to go to the hospital, but it was the right thing to do. I am worried about money.
Results are they found no infection, so I am clueless as to why I had such a high fever. I still have nystagmus. Luckily I see my gynecologist, Dr. Gray, on Thursday. Hopefully we can resolve this because I can't afford to keep going to the ER or being admitted to the hospital.
I had a breakdown yesterday in the SCCA clinic. I went to get my neupogen shot and I was accidently deleted in the system, after I checked in. After two hours, I was fit to be tied, angry and just started yelling. Not a pretty picture. Today I asked for emotional support and a referral to psyche.
I feel so lost because my energy is so low. I have very little of a "life" in terms of future employment and cannot visualize what my life will be. I want to be in church so badly. I desperately need to find my life's purpose and commit to good work. Maybe a psychologist can help me start on my way.
I do not want to be placed on antidepressants though, that is not the solution. I need real guidance.
Love all of you and thank you Mom and Mandy for watching out for me when I can't make good decisions on my own. I really didn't want to go to the hospital, but it was necessary.
Love you all.
Denise
They had trouble drawing blood from my port, so consequently had to stick me in the arm three times, but that was OK. I received two rounds of antibiotics and IV fluids for dehydration. The last time I had chemo I had a fever too.
Towards the end of this round of chemo on Friday, I had a reaction to the carboplatin. My hands itched and I got red spots on my face. I received benadryl, but later that night I had chills so bad I had to sleep with a heating pad. Then my fever of course spiked. I really didn't want to go to the hospital, but it was the right thing to do. I am worried about money.
Results are they found no infection, so I am clueless as to why I had such a high fever. I still have nystagmus. Luckily I see my gynecologist, Dr. Gray, on Thursday. Hopefully we can resolve this because I can't afford to keep going to the ER or being admitted to the hospital.
I had a breakdown yesterday in the SCCA clinic. I went to get my neupogen shot and I was accidently deleted in the system, after I checked in. After two hours, I was fit to be tied, angry and just started yelling. Not a pretty picture. Today I asked for emotional support and a referral to psyche.
I feel so lost because my energy is so low. I have very little of a "life" in terms of future employment and cannot visualize what my life will be. I want to be in church so badly. I desperately need to find my life's purpose and commit to good work. Maybe a psychologist can help me start on my way.
I do not want to be placed on antidepressants though, that is not the solution. I need real guidance.
Love all of you and thank you Mom and Mandy for watching out for me when I can't make good decisions on my own. I really didn't want to go to the hospital, but it was necessary.
Love you all.
Denise
Wednesday, November 25, 2009
Happy Thanksgiving
Tomorrow is Thanksgiving and I have more to be thankful for than ever before. My friends and family have been so supportive, so helpful, so caring and loving. My mother is literally taking care of me by allowing me to live with her in her home. I am enjoying the chance to renew my relationship with her and enjoying every minute. I love you MOM!
My adorable sister Mandy, who has literally re-arranged her life to help me with getting through this challenging time. I am so grateful to her, she religiously takes me to chemo and is there every time I need her. She has a beautiful family and business and has so graciously helped me manage my situation. For getting me health insurance, what a blessing. I love you and am so so blessed to be able to spend time with you, Pat, Laria and Addie. I pray for your peace and happiness every day.
My brother Arnie, who is a rock in our family. Whom was right there to help me when I needed it and always sends a message of hope and love. So responsible and helpful and I don't know what I would have done without him to help me get my car and stuff to Seattle. I pray that your family has serenity and union every day. I love you.
Aunt Debbie and Uncle Rich, for all their love and support. My Aunt Debbie sacrificed her time to stay with me in Folsom after my surgery. At this time of uncertaintly, my prayers are with you.
My friend Barb who helped me prepare for my move to Seattle and with errands while I was recovering from surgery in California. Craig, my ex-honey, who drove my belongings to Seattle from Folsom. What a generous feat and it was so nice to spend time with him in Seattle. My Uncle Don and Shawn Allen, and Aunt Kathy who call almost every day. Thank you. Aunt Bernie, Courtney and Uncle Bruce, I know how much you care and your notes of support have been so much appreciated. Mike and Pier, who made several runs to the airport for my family, while I was in surgical recovery. Judy Grondin, a minister from church, who took me to appointments in Folsom.
My pastor MSR Kidder, who blessed me with the sacrament of the sick on several occassions. God Bless. Philip Corollo who offered kind words of support and encouragement from afar. Randy Fann, for all the help with moving me around while Aunt Debbie and Mandy were in Folsom. Russ and Teresa Tuttle, for giving me my job and creating a way for me to have ongoing insurance. Tammy and Chris Gabel, Marina Krikorian and Jennifer and Jim Alvarez for all their kind support. My renewed friendship with Rebecca Moore and Jennifer Tesone. All the rest of my family, including my father. My new home minister, Patricia Davis, for coming to my home to give me holy communion. My doctors and nurses at SCCA, I love you so much. The doctors and nurses put patients first and make me feel special.
I hope that I have not forgotten anyone. Happy Thanksgiving to everyone!!!! I love you!!!
My adorable sister Mandy, who has literally re-arranged her life to help me with getting through this challenging time. I am so grateful to her, she religiously takes me to chemo and is there every time I need her. She has a beautiful family and business and has so graciously helped me manage my situation. For getting me health insurance, what a blessing. I love you and am so so blessed to be able to spend time with you, Pat, Laria and Addie. I pray for your peace and happiness every day.
My brother Arnie, who is a rock in our family. Whom was right there to help me when I needed it and always sends a message of hope and love. So responsible and helpful and I don't know what I would have done without him to help me get my car and stuff to Seattle. I pray that your family has serenity and union every day. I love you.
Aunt Debbie and Uncle Rich, for all their love and support. My Aunt Debbie sacrificed her time to stay with me in Folsom after my surgery. At this time of uncertaintly, my prayers are with you.
My friend Barb who helped me prepare for my move to Seattle and with errands while I was recovering from surgery in California. Craig, my ex-honey, who drove my belongings to Seattle from Folsom. What a generous feat and it was so nice to spend time with him in Seattle. My Uncle Don and Shawn Allen, and Aunt Kathy who call almost every day. Thank you. Aunt Bernie, Courtney and Uncle Bruce, I know how much you care and your notes of support have been so much appreciated. Mike and Pier, who made several runs to the airport for my family, while I was in surgical recovery. Judy Grondin, a minister from church, who took me to appointments in Folsom.
My pastor MSR Kidder, who blessed me with the sacrament of the sick on several occassions. God Bless. Philip Corollo who offered kind words of support and encouragement from afar. Randy Fann, for all the help with moving me around while Aunt Debbie and Mandy were in Folsom. Russ and Teresa Tuttle, for giving me my job and creating a way for me to have ongoing insurance. Tammy and Chris Gabel, Marina Krikorian and Jennifer and Jim Alvarez for all their kind support. My renewed friendship with Rebecca Moore and Jennifer Tesone. All the rest of my family, including my father. My new home minister, Patricia Davis, for coming to my home to give me holy communion. My doctors and nurses at SCCA, I love you so much. The doctors and nurses put patients first and make me feel special.
I hope that I have not forgotten anyone. Happy Thanksgiving to everyone!!!! I love you!!!
Saturday, November 21, 2009
temp 102 yesterday
Yesterday was a rough day. Not sure why but I had a temp of 102. Had to call the nurse. Took two extra strength tylenol and went back to bed with a cold compress. Today my temp is normal. The night after chemo I was up the whole time with chills, I couldn't get warm. I was chilled all day yesterday.
No run to the emergency room though. I am grateful for a better day today. The nausea will start to kick in on Sunday, third day after chemo. That is when the IV drugs wear off. Happy day.
The good news is I get Thanksgiving "off" and have treatment on Friday. I'll need to not eat a lot though, still have to stick to small amounts of food. That's OK. I am looking forward to a special day of Thanks for all the blessings in my life, especially family and friends. What more does a person really need?
Thank you to all of my supporters.
Love,
Denise
No run to the emergency room though. I am grateful for a better day today. The nausea will start to kick in on Sunday, third day after chemo. That is when the IV drugs wear off. Happy day.
The good news is I get Thanksgiving "off" and have treatment on Friday. I'll need to not eat a lot though, still have to stick to small amounts of food. That's OK. I am looking forward to a special day of Thanks for all the blessings in my life, especially family and friends. What more does a person really need?
Thank you to all of my supporters.
Love,
Denise
Tuesday, November 17, 2009
depressed a bit today
Hi everyone,
The bills are starting to trickle in, and basically it costs over two thousand per week just for my immune therapy. Over seven thousand per each chemo treatment. The port was about sixteen thousand. I am still in therapy and wonder what the final tally will be. My insurance has a high deductable but eventually caps. What a relief that is. I can't worry about the money, but I do.
Here is my opinion: Support services and financial aid should be for all cancer patients, not just those with the loudest marketing genies. I understand that research dollars are generated through fundraising, and fundraising is done by "non-profits" who are married to a particular type of disease. So if you have a rare disease, or a low-profile disease, you are less likely to find support for things like "bills".
So, today I am feeling down. The ACS is sending me a packet, we'll see what they send. In the mean time I wrote a note to Ellen DeGeneres asking her to do a show on Ovarian Cancer. She has low back pain and I wanted to let her know that LPB is a symptom of OC. I know I am sounding paranoid, but that is what OC is about, vague symptoms that if left unattended, can kill you. So maybe she will listen and really have her pain checked out.
I have chemo this week. Not too excited but feel lucky to have it. Love you all.
Denise
The bills are starting to trickle in, and basically it costs over two thousand per week just for my immune therapy. Over seven thousand per each chemo treatment. The port was about sixteen thousand. I am still in therapy and wonder what the final tally will be. My insurance has a high deductable but eventually caps. What a relief that is. I can't worry about the money, but I do.
I am applying for financial assistance from the Seatte Cancer Care Alliance, I just hope I qualify.
I am bummed because I have the "wrong" cancer. I called the American Cancer Society again the other day to look for financial resources, and of course, none for me. Gobs of stuff if I had lung cancer or breast cancer, and I just thank God that I have none of the above. My cancer cup is full right now.Here is my opinion: Support services and financial aid should be for all cancer patients, not just those with the loudest marketing genies. I understand that research dollars are generated through fundraising, and fundraising is done by "non-profits" who are married to a particular type of disease. So if you have a rare disease, or a low-profile disease, you are less likely to find support for things like "bills".
So, today I am feeling down. The ACS is sending me a packet, we'll see what they send. In the mean time I wrote a note to Ellen DeGeneres asking her to do a show on Ovarian Cancer. She has low back pain and I wanted to let her know that LPB is a symptom of OC. I know I am sounding paranoid, but that is what OC is about, vague symptoms that if left unattended, can kill you. So maybe she will listen and really have her pain checked out.
I have chemo this week. Not too excited but feel lucky to have it. Love you all.
Denise
Sunday, November 08, 2009
as chemo compounds in my body
I thought I'd take a moment to update on my progress. I am starting to get overwhelmed with all the medical appointments. Last week, I went to an appointment every day. Sun, Mon, Tues shot days. Wednesday I met my new primary care doctor who is concerned that I may be getting diabetes, swell. Thursday was chemo day. Friday was physical evaluation day, sigh.
On Friday I had to do a mandatory physical evaluation to see if I qualify for assisted transportation. What a hassle. and waste of taxpayer dollars. The only light there was I was enchanted with the story telling of an 83 year old WWII vet, from New York. He was a sweet elderly man, one leg had been amputated. He told me stories about how he loved the culture of New York, but had lived on a farm. Told me about growing up in the depression era and how he felt so fortunate to have been a clerk during the war. He said he taught soldiers to read and write as well. He helped pass the time, none-the-less. We were both there for our "test".
The reason the back-up transportation is so important is that there may be a day when I need a ride to a doctor or chemo. Mom cannot drive at dusk/dawn/night. My sister does have a family and they have all had the flu for two weeks now. King County has a transportation program, but the approval process is cumbersome and full of red tape. The process of physically going to a hospital, being tested by a physical therapist, and riding back was almost 4 hours. It exhausted me. I just hope I get approved, I'd really use the service if available to me.
Anyway, as far as my health goes, I am definitely feeling the nausea as the chemo schedule continues. I was told that the cumulative effects of chemo are that the side effects intensify as time passes. The chemo drugs linger in your body, and each time you add more chemo, there is more in your system., more to hurt you.
The good news is that my anti-nausea medication works fairly quickly. I am now being screened for diabetes because my blood sugars are running high. I am also noticing an effect called "nystagmus", which is basically my eyes will jerk back and forth super fast for no appearant reason. I just have to manage these little battles as I go.
Because of the new onset of nystagmus and possible diabetes, I am fairly sure I am not going to increase the frequency of my chemo. My doctor told me she was worried I wasn't getting enough chemo. I haven't fully decided yet, but I don't want to do any major additional damage to my body because of the chemo. I need to talk more with her and see what she says. So for now I am going to take my scheduled week off next Thursday, I really need it.
I am interested in any advice someone has to offer about how to live in the future. Assuming I heal from cancer, and assuming eventually I should need to return to work, I have no job. What am I going to do? I want to do something meaningful, something real. I would like to be a counselor or maybe learn how to be a technical writer.
The key is that my vocation will need to be based from home. If anyone has any ideas, please share comments. I need to use my second chance wisely and really do something valuable for others. I just don't have a clue what that should be.
Thank you all for your care and concern. Love you all. Denise
On Friday I had to do a mandatory physical evaluation to see if I qualify for assisted transportation. What a hassle. and waste of taxpayer dollars. The only light there was I was enchanted with the story telling of an 83 year old WWII vet, from New York. He was a sweet elderly man, one leg had been amputated. He told me stories about how he loved the culture of New York, but had lived on a farm. Told me about growing up in the depression era and how he felt so fortunate to have been a clerk during the war. He said he taught soldiers to read and write as well. He helped pass the time, none-the-less. We were both there for our "test".
The reason the back-up transportation is so important is that there may be a day when I need a ride to a doctor or chemo. Mom cannot drive at dusk/dawn/night. My sister does have a family and they have all had the flu for two weeks now. King County has a transportation program, but the approval process is cumbersome and full of red tape. The process of physically going to a hospital, being tested by a physical therapist, and riding back was almost 4 hours. It exhausted me. I just hope I get approved, I'd really use the service if available to me.
Anyway, as far as my health goes, I am definitely feeling the nausea as the chemo schedule continues. I was told that the cumulative effects of chemo are that the side effects intensify as time passes. The chemo drugs linger in your body, and each time you add more chemo, there is more in your system., more to hurt you.
The good news is that my anti-nausea medication works fairly quickly. I am now being screened for diabetes because my blood sugars are running high. I am also noticing an effect called "nystagmus", which is basically my eyes will jerk back and forth super fast for no appearant reason. I just have to manage these little battles as I go.
Because of the new onset of nystagmus and possible diabetes, I am fairly sure I am not going to increase the frequency of my chemo. My doctor told me she was worried I wasn't getting enough chemo. I haven't fully decided yet, but I don't want to do any major additional damage to my body because of the chemo. I need to talk more with her and see what she says. So for now I am going to take my scheduled week off next Thursday, I really need it.
I am interested in any advice someone has to offer about how to live in the future. Assuming I heal from cancer, and assuming eventually I should need to return to work, I have no job. What am I going to do? I want to do something meaningful, something real. I would like to be a counselor or maybe learn how to be a technical writer.
The key is that my vocation will need to be based from home. If anyone has any ideas, please share comments. I need to use my second chance wisely and really do something valuable for others. I just don't have a clue what that should be.
Thank you all for your care and concern. Love you all. Denise
Tuesday, November 03, 2009
#2 blade please, look ma no hair
Well, my hair is finally coming out. I had gone to Supercuts last week to get a real short pixie cut and went back again today to finish the "do". It feels strange to have a head of blonde fuzz, sort of Annie Lennox revisited here, only not orange. The only thing was the other patrons were all men and seemed a little disgusted with my "look". Well, sorry.
I feel OK though, because it's falling out and becoming annoying to manage. I was so fortunate that on this past Monday, I was able to receive two free wigs from the SCCA. I now have a very cute auburn bob cut and a conservative pixie blonde wig. I was going to get a longer blonde or red wig, but to be honest, I don't want to hassle with the possibility of the wig being crooked or out of place. Short styles will be easier to manage.
I also have a few beautiful scarves and hats, some compliments of Tammy Krikorian Gabel, thanks again. I feel like this transition to the "fuzzy look" is important. Sort of a rite of passage. Now people will know I have cancer and I don't have to explain myself all the time.
I am trying to walk a little more each day, but that is slow. Thank goodness mom has a treadmill. Not sure if I will walk today as the hair ordeal and walking from the parking space to the shop entrance seems like enough for today.
Tomorrow I meet a new primary doctor for the first time. I hope that visit goes well.
So today I am grateful for the compassion of a very nice stylist and thank God for all that He gives me. My hair will grow back again someday. The most important thing is being here on this earth, to appreciate my family and friends, and the beauty all around.
Love,
Denise
I feel OK though, because it's falling out and becoming annoying to manage. I was so fortunate that on this past Monday, I was able to receive two free wigs from the SCCA. I now have a very cute auburn bob cut and a conservative pixie blonde wig. I was going to get a longer blonde or red wig, but to be honest, I don't want to hassle with the possibility of the wig being crooked or out of place. Short styles will be easier to manage.
I also have a few beautiful scarves and hats, some compliments of Tammy Krikorian Gabel, thanks again. I feel like this transition to the "fuzzy look" is important. Sort of a rite of passage. Now people will know I have cancer and I don't have to explain myself all the time.
I am trying to walk a little more each day, but that is slow. Thank goodness mom has a treadmill. Not sure if I will walk today as the hair ordeal and walking from the parking space to the shop entrance seems like enough for today.
Tomorrow I meet a new primary doctor for the first time. I hope that visit goes well.
So today I am grateful for the compassion of a very nice stylist and thank God for all that He gives me. My hair will grow back again someday. The most important thing is being here on this earth, to appreciate my family and friends, and the beauty all around.
Love,
Denise
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