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Choosing Hope Over Hospice

$12,524 of $30,000 goal

Raised by 49 people in 4 months
Created September 9, 2018
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!!!
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Update 2
Posted by Cynthia Clark
28 days ago
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Ok it’s been a few months since my last update. I did take my second immunotherapy three days before my benefit party and was able to enjoy the most amazing group of friends and family and musicians that came out to support and fantastic party and silent auction with plenty of great food and dancing the night away wrapped in plenty of tears of joy and appreciation! Unfortunately this second experimental immunotherapy Optivo is not working either. My body was filling with fluid quickly which showed that my urterers were not draining due to a tumor pressing on them and not allowing my urine to drain out of my body. That was a morning trip to the ER, an operation at 5pm and then I felt fine enough to leave st noon the next day! Another tragedy avoided. So that was a side issue but I had to stop the Optivo because it caused colitis. They originally thought I had an obstruction and would need surgery but fortunately it is just another large mass pressing on my rectum. So the answer to both these problems is steroids which are anti inflammatory and allowing both my inserted stents to allow urine to pass and reduce tumor size for poops to pass..oh joy! In any case, they make me feel like Superwoman! At this point since the experimental options here are over I am faced with just starting single agent chemos from back in the day. They will have less side effects as far as no loss of hair or nauseousness but will still cause white blood counts to lower over time and make me susceptible to infection which is what can get you in the end. I’m supposed to just use one chemo at a time until they don’t work anymore and then move onto the next one. So, this is the best I’ll be and I start three weeks on with one week off starting on Friday. I’ll just enjoy each day as I have and feel fortunate I’ve had the last two years to feel all the love you have shared with me! It is not lost on me st all. I appreciate you all! I will reach out when I need more help but again so happy I’ve been able to hold my own. My family is here from the East Coast for the Holidays and we are having a great time and I’m loving all these Holiday treats! Mele Kalikimaka and Hau’oli La Hanau! Imua!❤️
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Update 1
Posted by Cynthia Clark
4 months ago
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I couldn't decide whether to puke or post something on FB. I decided that making a post and connecting to you would be much more pleasant!
It's the weekend and I'm trying to watch TV, and eat. It seems my most recent issues are catching up with me. A few weeks ago I felt another of my infamous back spasms coming on. As usual, its the weekend! I decide to self medicate, the only thing that ever works is morphine and although I don't have an IV drip, I am taking them in pill form to keep it at bay. I just upped my 2mg quick release dose to taking them more frequently. Monday morning my doctor didn't agree with that and put me on muscle relaxers to complement my regular low dose extended release morphine.
I guess four times is the lucky number to decide that we should finally direct that radiation beam to my lower back. There are several large tumors wrapping themselves around my lower back so it sounds like a good idea to me! They've been holding off since there are other side effects. One is the loss of 12% total of my kidneys. Doc said thats fine, theres plenty left if we ever need to do chemo again, NOT. This past Tuesday, 9/11, I finished 15 days of daily radiation to my back. It took three weeks because of the Hurricane/Tropical Storm delays and reschedules. Two days later, on Thursday 9/13, I was scheduled to go to orientation about my upcoming Optivo immunotherapy--what it is, how it works, what the side effects are, etc. Near the end of that discussion my nurse was called out of the room. Upon her return, she had a serious look on her face and I asked her what was up. Well, although she had earlier in the day clarified to them that I was only doing orientation and not infusion, the hospital pharmacy mistakenly mixed up a dose--about $15,000. worth. Well I immediately said "let's just infuse me" so as to not have to waste it. My only concern was that this was going to change my bi weekly infusion schedule and a previously scheduled trip to Lake Louise Canada that I was already ticketed for. YAY! I was able to still create my bi weekly infusion schedule without affecting my trip. After starting the infusion I realized that I was just starting to feel nauseous from the radiation two days ago and now I was going to start immunotherapy. My next realization is that the second infusion will come the day before my big birthday benefit on 9/28! Please say prayers for me that I will be feeling ok for this beautiful, top entertainment lined event, complete with silent auction thats been in the works for months! I was supposed to have a 3 day break before this event in my original schedule but now the infusion is the day before.
I find that distraction is the best medicine for me. Fortunately I haven't thrown up on the keyboard since I've been writing to you now and hopefully I won't be doing it at the event either! IMUA!
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$12,524 of $30,000 goal

Raised by 49 people in 4 months
Created September 9, 2018
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