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
CDC Symptom Diary Card
Thursday, January 14, 2010
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
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