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
CDC Symptom Diary Card
Thursday, December 31, 2009
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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