Choosing Hope Over Hospice
Donation protected
Four months ago I said "NO" to any more Chemo for my Stage Four Ovarian cancer that has metastasized throughout my lymph system.
And then I was offered Hospice and I said "What?! Are you crazy? Do you know me? Look at me? Do I look like I'm going to go to Hospice? Hell, "NO"! They told me that I have 4-6 months or maybe 10 months to live, and that they are notoriously bad at predicting patients death. That's right! Well at least, so far. I have just passed the four month mark and I'm still going strong-ish!
What I AM saying is to "YES" is Hope. "YES" is what I say to everything now. "YES", time is short so "Just do it!" I notice my life is full of cliches.
I knew what they meant when they predicted my death so I decided it was time to go say goodbye to as many of my friends and family as possible. Four months ago, on that day, I bought a ticket to go to the Mainland. They advised me that I would be symptomatic but it didn't stop me. This transformative trip was the most meaningful, beautiful journey of my life. My brave and compassionate girlfriend Carolyn Quan took on the challenge of traveling with me. I will share the more of the fun stuff with photos (I took about 500 a day) one day on Facebook but for this forum I am focusing more on updating my medical condition amidst this last big trip of a lifetime and why I am sharing this with you now.
I arrived about on April 23rd, 10:15pm in San Francisco and was picked up in "Gypsy Rose", Carolyn's RV, and we drove to our first overnight destination...we slept in a park underneath the Golden Gate Bridge!
Now this is where I can get off track with crazy stories and the beauty of two girls in an RV going through Yosemite, where the photo at top was taken during a spiritual moment--thats another story.
And then it happened, for the third time in three months, while driving out of Mariposa, the back spasm started as it did the last two times I had to go to the ER on Maui. Ugh, we tried stopping in small towns on the way down the mountain, stretching, doing yoga, meditation, all to no avail. Here we go Kaiser Permanente Fresno! As usual, waiting in pain in the waiting room after a couple of hours of driving. I was given morphine as the only way to detach my mind from the pain which is excruciating and ultimately causes me to throw up on the nurses or doctors. I was a little nervous because the last time I went to Maui Memorial I was administered a drug named Ketamine which is rarely given to adults. They were supposed to give it in the IV over a few minutes but my friend Emily witnessed them just push through the whole amount into my IV line. Needless to say I went on a psychedelic trip of which in part led me to believe I was a cheese puff and there were lots of school buses floating around and I kept walking up stairs that were circling around as if in an Escher painting. I remember taking a photo of myself and making it a postage stamp size and putting it into the lower left area of my brain to act as a passageway door to escape things if they got any crazier. At that point I heard Emily calling out to me that yes, indeed, I was a cheese puff and that it was fine with her! I slowly started seeing the ceiling and her smiling face and that was heaven to see! Apparently while this mind trip was happening for over an hour, they had to hold me down! A doctor came in later to ask how the trip was and I told him I was pissed and I was not expecting that. I didn't receive any apology, he just said yeah he never saw anyone go through that either and he was curious what I had to say. Ugh!See? I got off track! Anyway, I was released from the Fresno hospital and told to take muscle relaxers and pain meds. Then off to find them since I was released at midnight and the pharmacy was closed...
The other "symptomatic" occurrence was on the flight between Greensboro, NC and Philadelphia, PA on route to NY. I believe my lung collapsed upon landing but I didn't want to miss the Billy Joel concert I had tickets for in two days time so I sat in one of the massage chairs in the airport during the four hour layover, rested the next two days at my sisters house on Long Island and lo and behold it was gone! I could go to the concert ; ) Again that show is another story.
Since being back from my trip I decided to try alternative methods since nothing has worked for me. They brought all they had was back to using chemo drugs from the 1970's. I was referred to a naturopath on the Big Island through my cousin in Chicago. His name is Dr. Michael Traub and he is the medical director for the Lokahi Health Center. He specializes in Oncology! He set up the first alternative method with a local doctor here in Kihei to administer high dose vitamin C intravenously over five sessions. It is supposed to kill the cancer cells but upon reviewing the CAT scan, it didn't work. All my tumors got larger except the ones in my neck and chest that were hit with radiation before I left on my vacation. My CA 125 marker (normal range is 0-35) was 679 in April and is now at 1760. I changed my oncologist from the one on Oahu to Dr. Ted Keyes, director of Oncology for Maui Memorial Hospital. He is wonderful! He agreed that my body doesn't respond to chemo and recommended immunotherapy even though the Avastin I tried in February didn't work. He mentioned that he is having great success with Optivo (which works very much like the Keytruda you may have seen on commercials) on patients with lung cancer. He's been reading about some who experimented with it for Ovarian cancer. One woman lived another three years as long as she used it without stopping. When she did stop once for a monthlong vacation the cancer came back with a vengeance and thats what ultimately killed her. My doctor applied to my insurance company and was denied. He appealed that and was denied again be cause the FDA hasn't approved it for Ovarian cancer yet. The cost is $7,500. every two weeks or $15,000./month. He appealed to the pharmaceutical company for "Compassionate Care" and they agreed to cover the costs only until December 31st.
On January 2, a new law, "Your Health, Your Choice", in Hawaii will pass that allows you to take a pill that will put you to sleep permanently. In order to get the pill currently you need two doctors to sign off that you are terminally ill and one doctor to say you are of sound mind to make the decision. I will have no problem with that requirement at this point. Even though the bill was passed the State is not ready at this stage to implement it. I am following the bill through the Department of Health and it looks like there will be committee discussions about who, how, where, costs, etc.? need to be worked out. I need to stay alive until I have this option, at least!
If the Optivo works, I would like to be able to afford to buy it out of pocket to save my life until they find a cure or have the pill be available. Otherwise it will be a choice of either starvation or dehydration as the way I go out. Neither of which I feel are humane. Please feel free to help me fund my future in which hopefully I can CHOOSE to say NO to HOSPICE and YES to HOPE! Mahalo! IMUA!!!
And then I was offered Hospice and I said "What?! Are you crazy? Do you know me? Look at me? Do I look like I'm going to go to Hospice? Hell, "NO"! They told me that I have 4-6 months or maybe 10 months to live, and that they are notoriously bad at predicting patients death. That's right! Well at least, so far. I have just passed the four month mark and I'm still going strong-ish!
What I AM saying is to "YES" is Hope. "YES" is what I say to everything now. "YES", time is short so "Just do it!" I notice my life is full of cliches.
I knew what they meant when they predicted my death so I decided it was time to go say goodbye to as many of my friends and family as possible. Four months ago, on that day, I bought a ticket to go to the Mainland. They advised me that I would be symptomatic but it didn't stop me. This transformative trip was the most meaningful, beautiful journey of my life. My brave and compassionate girlfriend Carolyn Quan took on the challenge of traveling with me. I will share the more of the fun stuff with photos (I took about 500 a day) one day on Facebook but for this forum I am focusing more on updating my medical condition amidst this last big trip of a lifetime and why I am sharing this with you now.
I arrived about on April 23rd, 10:15pm in San Francisco and was picked up in "Gypsy Rose", Carolyn's RV, and we drove to our first overnight destination...we slept in a park underneath the Golden Gate Bridge!
Now this is where I can get off track with crazy stories and the beauty of two girls in an RV going through Yosemite, where the photo at top was taken during a spiritual moment--thats another story.
And then it happened, for the third time in three months, while driving out of Mariposa, the back spasm started as it did the last two times I had to go to the ER on Maui. Ugh, we tried stopping in small towns on the way down the mountain, stretching, doing yoga, meditation, all to no avail. Here we go Kaiser Permanente Fresno! As usual, waiting in pain in the waiting room after a couple of hours of driving. I was given morphine as the only way to detach my mind from the pain which is excruciating and ultimately causes me to throw up on the nurses or doctors. I was a little nervous because the last time I went to Maui Memorial I was administered a drug named Ketamine which is rarely given to adults. They were supposed to give it in the IV over a few minutes but my friend Emily witnessed them just push through the whole amount into my IV line. Needless to say I went on a psychedelic trip of which in part led me to believe I was a cheese puff and there were lots of school buses floating around and I kept walking up stairs that were circling around as if in an Escher painting. I remember taking a photo of myself and making it a postage stamp size and putting it into the lower left area of my brain to act as a passageway door to escape things if they got any crazier. At that point I heard Emily calling out to me that yes, indeed, I was a cheese puff and that it was fine with her! I slowly started seeing the ceiling and her smiling face and that was heaven to see! Apparently while this mind trip was happening for over an hour, they had to hold me down! A doctor came in later to ask how the trip was and I told him I was pissed and I was not expecting that. I didn't receive any apology, he just said yeah he never saw anyone go through that either and he was curious what I had to say. Ugh!See? I got off track! Anyway, I was released from the Fresno hospital and told to take muscle relaxers and pain meds. Then off to find them since I was released at midnight and the pharmacy was closed...
The other "symptomatic" occurrence was on the flight between Greensboro, NC and Philadelphia, PA on route to NY. I believe my lung collapsed upon landing but I didn't want to miss the Billy Joel concert I had tickets for in two days time so I sat in one of the massage chairs in the airport during the four hour layover, rested the next two days at my sisters house on Long Island and lo and behold it was gone! I could go to the concert ; ) Again that show is another story.
Since being back from my trip I decided to try alternative methods since nothing has worked for me. They brought all they had was back to using chemo drugs from the 1970's. I was referred to a naturopath on the Big Island through my cousin in Chicago. His name is Dr. Michael Traub and he is the medical director for the Lokahi Health Center. He specializes in Oncology! He set up the first alternative method with a local doctor here in Kihei to administer high dose vitamin C intravenously over five sessions. It is supposed to kill the cancer cells but upon reviewing the CAT scan, it didn't work. All my tumors got larger except the ones in my neck and chest that were hit with radiation before I left on my vacation. My CA 125 marker (normal range is 0-35) was 679 in April and is now at 1760. I changed my oncologist from the one on Oahu to Dr. Ted Keyes, director of Oncology for Maui Memorial Hospital. He is wonderful! He agreed that my body doesn't respond to chemo and recommended immunotherapy even though the Avastin I tried in February didn't work. He mentioned that he is having great success with Optivo (which works very much like the Keytruda you may have seen on commercials) on patients with lung cancer. He's been reading about some who experimented with it for Ovarian cancer. One woman lived another three years as long as she used it without stopping. When she did stop once for a monthlong vacation the cancer came back with a vengeance and thats what ultimately killed her. My doctor applied to my insurance company and was denied. He appealed that and was denied again be cause the FDA hasn't approved it for Ovarian cancer yet. The cost is $7,500. every two weeks or $15,000./month. He appealed to the pharmaceutical company for "Compassionate Care" and they agreed to cover the costs only until December 31st.
On January 2, a new law, "Your Health, Your Choice", in Hawaii will pass that allows you to take a pill that will put you to sleep permanently. In order to get the pill currently you need two doctors to sign off that you are terminally ill and one doctor to say you are of sound mind to make the decision. I will have no problem with that requirement at this point. Even though the bill was passed the State is not ready at this stage to implement it. I am following the bill through the Department of Health and it looks like there will be committee discussions about who, how, where, costs, etc.? need to be worked out. I need to stay alive until I have this option, at least!
If the Optivo works, I would like to be able to afford to buy it out of pocket to save my life until they find a cure or have the pill be available. Otherwise it will be a choice of either starvation or dehydration as the way I go out. Neither of which I feel are humane. Please feel free to help me fund my future in which hopefully I can CHOOSE to say NO to HOSPICE and YES to HOPE! Mahalo! IMUA!!!
Organizer
Cynthia Clark
Organizer
Kahului, HI
