Joanie Miracle Triestman

With ovarian cancer awareness all September, my goal is to tweet, Facebook, Instagram as much info about Ovarian every day. I always hear my doc’s voice saying if there was more awareness, then there would be more funding, more investment in the future of ovarian cancer patients by pharmaceutical companies instead of removing ovarian cancer from trials since it is such a bad statistic. How can we improve the statistics if we don’t improve treatment options? It is great that Stand Up 2 Cancer announced the ovarian cancer dream team. My doc must have known about this before as he mentioned it to me at a visit long ago. He has a passion for research and innovative treatment. Just look at my list of 23 chemo protocol combos. The immunotherapy trial is my 24th. I have given this list to anyone on any message board who was told by their doctor after 2 chemo regimen to go to hospice. These are mothers, grandmothers, sisters, friends, and cousins who were told there were no more options. They have not lost hope and have the strength to fight, but are told to basically give up. None of my UCLA team has ever given up on me even through allergic reactions, 19lbs of malignant fluid, rising tumor marker etc…the team always finds options as I’m always willing to fight.

Our trip to Maui was the best ever. I know I probably have said that about our cruise or other trips, but we needed this trip the most. There was no watching of any TV and there were no games. We only had each other to talk laugh, and express our joys and fears. Since Camp Kesem, Alex has found his voice for clearly expressing his thoughts. He has grown so much this summer with all his camp experience and with his Brickshare project. He has learned about people and gained valuable life lessons. He has had disappointment, frustration, fear, and pure joy and happiness. There has been a lot of “why?”, but more of discovery of who he is, who he wants to be, and who he wants to share his time with. He knows how valuable time is and how good days for everyone are something that we cherish. He knows I cannot tell him about the future, but I can tell him that I am always willing to do whatever I can to stay alive.
Every step I took including the 5 miles I walked every day with Jim were magical. Alex agreed that Maui is magical. We had such adventures and enjoyed every minute. When we ate at La Provence it was as if we were in France instead of Maui listening to Alex try his French phrases. When we ate at the Monkeypod, I could actually taste the food! When Alex and I walked together, we watched a nesting bird, listened to his music, and talked about a trip to Europe. Every day was amazing. I loved being with my boys and they reminded me how just few weeks before I was in a wheelchair not moving and now I walked 5 miles!
The unfortunate reality was that the very next day we came home, we had to go to UCLA. With the new trial, tests needed to be done and blood taken to measure the drug. Plus, I got to see my doc. I am still treated like a rock star at UCLA. Since I had to have a zillion teeny tiny vials of blood taken which will be sent to some mystery lab, my nurses insisted in doing every vial verification with name and date of birth only to correct me by saying, ” Joanie Miracle Triestman.” They put me in a private room and I was escorted away from the cancer faces. Strange, without seeing those faces, the automatic nausea that I get,never happened. The best part about this visit was seeing my doc. The nurses were so excited to see his reaction. He came into the room with a new Fellow. I barely make an effort these days to remember the names since by the time I learn the name there is a new one  in his place.  He smiled and reached forward to hold my hand and hug me, both of which is a demonstration of his excitement. I flashed my belly to him and he responded with, “I see” and “I’m excited” said with a smile, but with cautious optimism. I get it. Been here, done that over and over again. For me, I felt that I was given a new chance and did feel like the miracle the nurses were calling me.  From the inability to walk to walking 5 miles, I feel better than I ever had. With the missing of the usual fog caused by over 4 years of chemo, I can think clearly these days which makes me energized beyond what any one is used to. I feel almost like my old self. Could it be the DuoLingo ap woke up my French brain and this cleared out some webs of fog from chemo or the new immunotherapy which is supposed to cause a slew of side effects, but not chemo brain?  Whatever it is, I will cease the moment.
When you have moments of feeling good knowing what was, you tend to go a bit crazy enjoying every moment. My boys especially Jim fully understand it. So, if I am focused on doing a photo album, making lists, shopping at Target, they don’t question about why I’m doing so much, but smile and say, “love you.” Why does something have to be done today? Because today is now and now is what I know and enjoy. I must live like this always. Positive energy,thoughts, activities, people, are what motivate me and give me even more energy. Jim understands and cheers me on every day. Alex now stops himself with his teen complaints only to turn them into positive statements. I have no time for negative and emotional vampires. I know you all know this. Get on my positive train for living in the moment, enjoying each day, and finding your sunshine. As my doc says, I have a cancer card pass. My card does not entitle me to be belligerent, but it does allow me to take the time to fast pass ahead of the vampires and negativity. It may be difficult to understand why I do what I do and say what I say, but honestly I don’t have the time to explain. I think you know that I’m seizing the day and finding sunshine.
I found my sunshine moment in hearing Alex play his trumpet in a jazz jam session. My only peak was seeing his butt wiggle to the music and his head nodding to the beat. The sounds were amazing and my heart was full of joy as his music warmed my soul.
For over the past four plus years, I’ve met women online and held their hands. I listen to their concerns, get them off the island of negativity, give them lists of drugs to take to their docs, give them hope, and try to convince them that after 2 lines of treatment that hospice is not the answer because there is always something to try. This summer was a sad one for me. Today, I lost another cancer buddy who seemed to have the strength that I did. She experienced the fluid like I did, but her doc tried a different chemo which for me was never helpful and my doc understood this drug to not be a good single agent. She has a son who is 12 and she is gone today. Her body was tired and that chemo was not good. Another mom gone to ovarian cancer. It saddens me, frustrates me, and motivates me more to enjoy today, kiss Alex, hug my hubby, and be thankful of being alive. Our kids may make us crazy at times, but today just smile, hug them, and listen to their stories, hear their jokes, and try to understand their stress which is unlike what we dealt with. Breathe deep, stay calm, avoid the vampires, and laugh a lot!

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