In two days I will see the gynecology oncologist for my "post chemo" review. With trepidation I have researched more on the BRCA 1 mutation along with reviewing additional information on Ovarian Cancer survival statistics. At the same time I am haunted by the fact that there will be an end, just how soon, only God really knows. My thoughts today have been scattered and dark. How long will I really live? What good will I do? How am I going to survive financially while alive? What is my purpose?
I do know that I would love to interview other people who have been diagnosed with a known "killer" disease, and find out how they feel. What keeps them going? Is it faith? What about strong relationships with family and friends? What about daily good deeds, acts of love and kindness? What about simply taking in a sweet breath of fresh air each day and making an effort to remember the moment? What about taking a moment to be with someone you love and just rejoicing in their being? What about sitting in silence and remembering your life?
In other words I have really not the slightest clue how to proceed today. In a few days I hope to have a better idea. It is highly unlikely that my doctor will give me anything concrete, but I do hope she can sort of guide me on how to continue knowing that because of my advanced cancer, there is a strong possibility of it returning.
Did I mention that when I met with the genetic medical oncologist to talk about the BRCA 1 mutation, she glossed over a statement "you are more likely to have ovarian cancer return than to get breast cancer". Still regret digging further into that at the moment, so I'll save that question for Dr. G.
I went onto the FORCE website today and read message boards from mothers who are BRCA 1 positive. It was so sad to hear the guilt from so many who blamed themselves for potentially passing the mutation to their children. Some were angry at God and then others embraced God for the daily graces He gives us. I just pray every day for all in need to reach out to God for his love. We all have our cross to bear. I am not special.
On a side note, my sister and her husband are getting a cute cat for their children. A wonderful yellow cat saved from a shelter. Her children are rejoicing. I am so happy for all of them because I know the girls will be great cat moms. What a blessing to experience such joy.
My sis and her husband have made so many sacrifices in order to help me through this entire ordeal. I have been very fortunate. There are not enough words to express my gratitude. Thank you Mandy!
Love,
Denise
CDC Symptom Diary Card
Tuesday, March 16, 2010
Friday, March 12, 2010
Breast MRI
Hi everyone,
I underwent a breast MRI and abdominal CT scan this past Monday. My sister and mother patiently waited for three hours at SCCA, being kind and supportive as always. I had been nervous and real depressed. This past Sunday the three of us attended a meeting through FORCE (Facing Our Risk of Cancer Empowered). We met three other women who are BRCA 1 mutation positive. Networking with other women who also face the uncertainty of when breast cancer arrives is very helpful. One woman had a prophylactic mastectomy because she had already had breast cancer before her genetic testing. Another woman had also gone through Ovarian Cancer surgery and chemo in a very similar scenario to myself. Another woman has tested positive, had ovarian cancer and plans to have a prophylactic mastectomy.
I received a call yesterday that my breast MRI was "good" and that I would be receiving a letter as to the recommended follow-up. I was so relieved, so grateful, and thanked God above. This gives me hope for my other family members who have the genetic mutation. I am the oldest sibling, so I pray that my younger siblings would also be negative for any findings.
Now I wait for my appointment with my gynecology oncologist on March 18th to review my abdominal CT scan and bloodwork. I am relieved to know now that I will be in a "surveilance" program for life at SCCA. As much as it drives me crazy to have so many medical appointments, I need the support and would have panicked if there were no such program.
I will let you know about the letter. For now I am focusing on recovery. I am so weak, low endurance and very depressed. I have started an antidepressant, but it takes almost a month for the effects to kick into full gear. So each day I do a little more, but I feel "cloudy". I have trouble concentrating and really have no motvation. I pray that I get more motivated as time passes, with spring around the corner, I should improve.
I will get to receive some physical therapy to work on my scar tissue and strength towards the end of March. Wonderful.
Now I am ready to be more supportive to my siblings. I love them dearly.
Bye for now.
I underwent a breast MRI and abdominal CT scan this past Monday. My sister and mother patiently waited for three hours at SCCA, being kind and supportive as always. I had been nervous and real depressed. This past Sunday the three of us attended a meeting through FORCE (Facing Our Risk of Cancer Empowered). We met three other women who are BRCA 1 mutation positive. Networking with other women who also face the uncertainty of when breast cancer arrives is very helpful. One woman had a prophylactic mastectomy because she had already had breast cancer before her genetic testing. Another woman had also gone through Ovarian Cancer surgery and chemo in a very similar scenario to myself. Another woman has tested positive, had ovarian cancer and plans to have a prophylactic mastectomy.
I received a call yesterday that my breast MRI was "good" and that I would be receiving a letter as to the recommended follow-up. I was so relieved, so grateful, and thanked God above. This gives me hope for my other family members who have the genetic mutation. I am the oldest sibling, so I pray that my younger siblings would also be negative for any findings.
Now I wait for my appointment with my gynecology oncologist on March 18th to review my abdominal CT scan and bloodwork. I am relieved to know now that I will be in a "surveilance" program for life at SCCA. As much as it drives me crazy to have so many medical appointments, I need the support and would have panicked if there were no such program.
I will let you know about the letter. For now I am focusing on recovery. I am so weak, low endurance and very depressed. I have started an antidepressant, but it takes almost a month for the effects to kick into full gear. So each day I do a little more, but I feel "cloudy". I have trouble concentrating and really have no motvation. I pray that I get more motivated as time passes, with spring around the corner, I should improve.
I will get to receive some physical therapy to work on my scar tissue and strength towards the end of March. Wonderful.
Now I am ready to be more supportive to my siblings. I love them dearly.
Bye for now.
Thursday, February 25, 2010
Branching off on a new road
I am finally starting to feel a bit more energy, recovering slowly from 6 months of chemotherapy. Abdominal pain seems to be a chronic issue that I will now face every day for the rest of my life. Tomorrow my mother will join me with my sister to meet a new doctor that will address the new threats related to BRCA 1 mutation. I remain terrified and my sister, God Bless her, remains positive and strong.
A friend wrote to me to say that we are blessed to have received the testing and now we can at least have an opportunity to alter the predicted course of our lives. We have an opportunity to thwart off breast cancer. I am so grateful that we have this chance and at the same time am overwhelmed with what it means to actively thwart the threat of breast cancer. I don't want any more chemo. I don't want any more surgery. I don't want to have to do costly MRIs every 6 months, but what I want has no bearing on what may be needed.
I would give anything to save my sister from facing any of these decisions. I ask "why".
I kindof feel that of all the options, I'd rather have a prophylactic mastectomy than more chemo. But I can let go of my breasts because I'm still in the dark as to my overall life expectancy. I see my gynecology oncologist on March 18th. I won't have a clue as to my future until that day. If my ovarian cancer has shortened my overall life expectancy, than how important is it to address breast cancer anyway.
How important are my breasts? My family is more important to me. It is more important that because my sister does not currently have cancer, my brother does not have cancer, that they get the best possible consultation and land on the best possible path to prevent cancer. I am obviously depressed. It is so hard for me to comprehend a future for me. I can't see it right now, but I want to be here. I want to see my family every day and be a part of their lives.
I just completed a form for the new breast cancer doctor that involves attitudes toward the threat of cancer. I think that this new doctor will hopefully prescribe an anti-depressant. I have historically been opposed to anti-depressants for me personally, but this is situational depression. I think that they will help me a little bit so that I can get through this new challenge. I don't want to stay on them.
These are my thoughts for today.
On a side note:
I am watching the health care summit on CNN and wondering why there's a debate. When will we elect officials who value life from womb to tomb? The extreme right wing is so hypocritical. I believe health care is a right and that we must move forward with reform, one way or another.
For 10 years I went without health insurance. And for several more years I paid over $300 per month for junk plans that really covered very little. Now I finally have good insurance and am fortunate to have insurance. Every human being deserves the opportunity to have medical treatment, period.
A friend wrote to me to say that we are blessed to have received the testing and now we can at least have an opportunity to alter the predicted course of our lives. We have an opportunity to thwart off breast cancer. I am so grateful that we have this chance and at the same time am overwhelmed with what it means to actively thwart the threat of breast cancer. I don't want any more chemo. I don't want any more surgery. I don't want to have to do costly MRIs every 6 months, but what I want has no bearing on what may be needed.
I would give anything to save my sister from facing any of these decisions. I ask "why".
I kindof feel that of all the options, I'd rather have a prophylactic mastectomy than more chemo. But I can let go of my breasts because I'm still in the dark as to my overall life expectancy. I see my gynecology oncologist on March 18th. I won't have a clue as to my future until that day. If my ovarian cancer has shortened my overall life expectancy, than how important is it to address breast cancer anyway.
How important are my breasts? My family is more important to me. It is more important that because my sister does not currently have cancer, my brother does not have cancer, that they get the best possible consultation and land on the best possible path to prevent cancer. I am obviously depressed. It is so hard for me to comprehend a future for me. I can't see it right now, but I want to be here. I want to see my family every day and be a part of their lives.
I just completed a form for the new breast cancer doctor that involves attitudes toward the threat of cancer. I think that this new doctor will hopefully prescribe an anti-depressant. I have historically been opposed to anti-depressants for me personally, but this is situational depression. I think that they will help me a little bit so that I can get through this new challenge. I don't want to stay on them.
These are my thoughts for today.
On a side note:
I am watching the health care summit on CNN and wondering why there's a debate. When will we elect officials who value life from womb to tomb? The extreme right wing is so hypocritical. I believe health care is a right and that we must move forward with reform, one way or another.
For 10 years I went without health insurance. And for several more years I paid over $300 per month for junk plans that really covered very little. Now I finally have good insurance and am fortunate to have insurance. Every human being deserves the opportunity to have medical treatment, period.
Tuesday, February 16, 2010
clouded celebration with BRCA 1 mutation
This Thursday I will receive what is supposed to be my last Taxol treatment. On the same day, my Uncle Rich will receive his final radiation treatment. I am very happy for Uncle Rich. I just wish I was not so depressed.
My sister and I will be joined together at the hip on this last visit for chemo, and I will be embracing her support. It sounds strange, but I will miss our routine. I cannot for the life of me find anything valuable enough to return the energy, but I am looking.
Our celebration is clouded with recent unexpected news related to my genetic testing. I have tested positive for the BRCA 1 genetic mutation, and unfortunately so has my beautiful sister. The BRCA 1 genetic mutation occurs in both males and females, and indicates an increased risk for both ovarian and breast cancer.
I cannot remember if I have mentioned this yet. For the longest time I blamed myself for having ovarian cancer, wondering what I had done to my body, what did I do to deserve this. The genetic test results are a scary wake up call to our family and truly overwhelming.
My sister has the best and healthiest attitude, to take things a day at a time. Our next step is to visit the breast imaging center and most likely be scheduled for a breast MRI. Regular mammograms are not sufficient testing techniques when there is a known genetic mutation.
Our mother looked up some interesting and important history on the BRCA 1 mutation: I hope the above link takes you there. http://www.smithsonianmag.com/science-nature/san-luis-valley.html?c=y&page=1
I feel a bit paralyzed, and think I will need antidepressants. I can barely commit to 5 minutes on the treadmill, still feel like a tire ran over my stomach, and can't imagine my life in 3 months or 6 months.
The only energy that drives me is that I need to pray for my sister and brother, my mother and all my relatives that noobody else has the mutation. I will be praying diligently for my sister. She is the most amazing person I know with a wonderful husband and two beautiful girls from China. My mother inspires me every day to be a better person, as I see how she plugs away at life in spite of brittle diabetes. Every day is a challenge here at home for us all and I can't bear any more news of any more cancer in our family.
So we will get our MRIs and pray, and deal and cope and pace our responses. We will love and support each other through this time.
I love my family so much and hope that I will serve them well in the future. Still ascertaining my calling. I can only take things one day at a time here.
Love,
Denise
My sister and I will be joined together at the hip on this last visit for chemo, and I will be embracing her support. It sounds strange, but I will miss our routine. I cannot for the life of me find anything valuable enough to return the energy, but I am looking.
Our celebration is clouded with recent unexpected news related to my genetic testing. I have tested positive for the BRCA 1 genetic mutation, and unfortunately so has my beautiful sister. The BRCA 1 genetic mutation occurs in both males and females, and indicates an increased risk for both ovarian and breast cancer.
I cannot remember if I have mentioned this yet. For the longest time I blamed myself for having ovarian cancer, wondering what I had done to my body, what did I do to deserve this. The genetic test results are a scary wake up call to our family and truly overwhelming.
My sister has the best and healthiest attitude, to take things a day at a time. Our next step is to visit the breast imaging center and most likely be scheduled for a breast MRI. Regular mammograms are not sufficient testing techniques when there is a known genetic mutation.
Our mother looked up some interesting and important history on the BRCA 1 mutation: I hope the above link takes you there. http://www.smithsonianmag.com/science-nature/san-luis-valley.html?c=y&page=1
I feel a bit paralyzed, and think I will need antidepressants. I can barely commit to 5 minutes on the treadmill, still feel like a tire ran over my stomach, and can't imagine my life in 3 months or 6 months.
The only energy that drives me is that I need to pray for my sister and brother, my mother and all my relatives that noobody else has the mutation. I will be praying diligently for my sister. She is the most amazing person I know with a wonderful husband and two beautiful girls from China. My mother inspires me every day to be a better person, as I see how she plugs away at life in spite of brittle diabetes. Every day is a challenge here at home for us all and I can't bear any more news of any more cancer in our family.
So we will get our MRIs and pray, and deal and cope and pace our responses. We will love and support each other through this time.
I love my family so much and hope that I will serve them well in the future. Still ascertaining my calling. I can only take things one day at a time here.
Love,
Denise
Friday, February 12, 2010
Almost done
I need to thank Mandy again for being so helpful in being with me during chemo. I want to thank my mom also for always being there to help my needs at home. I have been depressed.
Next Thursday I go for my final scheduled chemo. I see my oncologist in March and in March I will be able to ask my oncologist about my status and follow-up care. I am so lost as to my calling and can only pray that I will find a home doing something good for others.
My goal for now is to finish chemo and get my digestive health in order. Last time around I almost wound up with a bowel obstruction and am absolutely paranoid of the whole thing. It is a battle. I used to be all well in that department. The nurses say that the chemo negatively affects your digestive health, so hopefully in a few weeks I can get a better handle on it.
In the mean time I am fighting my depression and trying to get prepared for the next battle. I love my sister so much and we will fight this together.
Love,
Denise
Next Thursday I go for my final scheduled chemo. I see my oncologist in March and in March I will be able to ask my oncologist about my status and follow-up care. I am so lost as to my calling and can only pray that I will find a home doing something good for others.
My goal for now is to finish chemo and get my digestive health in order. Last time around I almost wound up with a bowel obstruction and am absolutely paranoid of the whole thing. It is a battle. I used to be all well in that department. The nurses say that the chemo negatively affects your digestive health, so hopefully in a few weeks I can get a better handle on it.
In the mean time I am fighting my depression and trying to get prepared for the next battle. I love my sister so much and we will fight this together.
Love,
Denise
Thursday, January 28, 2010
coping with more pain
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
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
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
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