Sunday, August 11, 2019

Dani - Cedar's 8-11-19

I think I have PTSD from yesterday. Watching my daughter suffer in very severe (I-want-do-die pain) for eight hours. We do not blame the doctors or nurses, of course. Complications happen. They are the best. They were all moving as fast as possible and very caring. We are grateful to be at the best colon-rectal facility in the country. I will be writing thank you cards to ever nurse, doctor, and toilet cleaner.
It was like seeing myself in the mirror all day, all week. I was Dani's age when I went through my years of high-does chemo, bone marrow transplants, complications of the Pneumothorax after (emergency surgery) putting in the Portacath and double lumen Hickman line on a Saturday - fevers of 106 plus while in isolation at Hoag for days and days, no esophagus lining to even swallow a Tylenol. And, oh, the pain. I knew I would die there in room 860. I never expected to leave that room, ever! There are only four rooms, one on each corner for isolation. How I survived, I have no idea. Reliving my own trauma from many surgeries, hospital stays, chemo, hair loss, steroids, friends dying from cancer and Aides, fighting two cancers --- and trying to be supportive for Dani has...?? no words! Every time I pushed the nurse button the flashbacks came rushing back.
Yesterday, Dani was begging them to take the pain away. She kept saying, "I cannot do this anymore". I have been there, in her hospital bed. She really said, Help me. I want to die. She meant it. 
Begging, crying, doubled over in severe pain. Seeing your child like this is not something I can forget. Talk about a fucking rollercoaster of life. From helpless patient to helpless parent.
It was as if we had matching hospital gowns (colors not changed), matching thoughts, matching fears while being rolled down the elevator to the scans and MRIs....that fear of "where is the nurse" my veins are burning. Not eating for weeks. What will the results be? More surgery? More cancer, in my case.
I get lost coming home from Cedars almost every day. My brain is on overload. My emotions, -- don't even think about it. She is going to need a lot of help when she gets out. I will be there as much as I can, while trying to work and hold down my business.
But I am coming away from this experience stronger than ever. People who live in their glass houses and cannot handle life's ups and downs, do not cross my path. I have no patience for you. Pay your bills, man the fuck up, stop whining, be grateful for your life, no matter what. If you can eat, poop, do your dishes, walk, then do it. If you are in ill health from lack of exercise, then get to the gym. I don't want to hear a complaint because you have to work! Be grateful you can work. Some cannot. Many Vets and others ride bikes with one leg, one arm, run marathons in their wheelchairs. There are no excuses!
Dani will be living the rest of her life pooping in a bag, thanks to negligence that happened in 2015 at a different hospital. She suffered these last four years for nothing. That news, alone, on Tuesday out of surgery, nearly put me in a walking coma. But she will adapt. She will make the best of it. She is happy she is out of pain. She wants to help others now. Follow her lead. Volunteer. Help another human. Be kind. Say hello the homeless and mentally ill, it could be you some day.
Today, so far, seems better. How Team Rebecca Riley did what they did with such strength and continue to do is the best example of being a strong parent. I can say that doing this all alone has made it extra difficult.
Most people don't want to hear it, or deal with....yeah, the glass houses. Be careful, it could be you some day in that lonely place.
The only people I can talk is you, here on FB. My friends here are supportive and your feedback has gotten me through every minute. Thank you for caring!
The Rileys are my mentors and heroes! Team Riley gave me courage. They have been through much more and they keep living, laughing, loving, and sharing! Learn from them too. Dani wants to meet you Rebecca Riley!
Looking for some bright to pull me from this darkness, this sadness for my baby, all 5'11 of her. I will stand stronger. I will pay it forward, as she will. We are grateful, at the end of the day, because we are blessed with knowing that the only way to live is in finding gratitude in every corner. Be your best self today. Donate! Send a stranger some money! Send someone in need some money. Help others, with no expectations. Dream, live them, work for them. Love your loved ones. Tell your friends you love them today. Most of all, don't be selfish, unless you like misery. Write! Journal! Make memories! See how it easy it is? Are you smiling? Are you petting your cat, dog, hugging your kid? Money and material things are far from happiness. Make your own "happy" :) We all survive, until we don't. We all die. I thank God for saving me over and over so I can give back.
If you don't like my post, please feel free to unfriend me! I don't like you either.
For all who have been texting and offering me support. Love you! Thank you!

Saturday, August 3, 2019

Moving on with the fear

Beautiful talk. Yes, I cried. Of course, I relate. The years, for me, after two bone marrow transplants and chemo, was interferon injections three days a week in my stomach or thighs, monthly Aredia/Zometa, until that treatment (possibly keeping me in remission), caused the horrific spontaneous break of my left femur. They took that away after having it from 1997 to 2009, and remission ended. I almost feel I could right a book on the pain of the femur break itself. Cancer, and the fear of it killing me, held me hostage from breast cancer to multiple myeloma, and well beyond. We all need to find something to help us live in the recovery, to live in the in between, as she says in this talk. Please listen.
I found mountain biking. For me, that feeling of riding my bike over rocks, roots, and climbing for miles, gave me a feeling of healing. Riding as fast as I can over some technical single track gave me the feeling of living, and having no fear.
I lost my best friend in 1995. He was 25, to Ewings Sarcoma. How I miss Alan Tilley. I think of him every day. I was diagnosed with multiple myeloma some months after his death. Bone cancer v bone marrow cancer? How ironic. He was 25. I was 37. He was gay. I was straight. But our friendship was like none other. Alan, if I could do it again, I would change nothing, if it meant not having our bond, our laughs on cancer and death, our friendship.
Today I had no idea I would be zipping downhill on my bike on something called the Donut Ride in PV past the Wayfayers Chapel where we had his service. The memories of his cancer torture returned, as I felt like I was saying hello to him from my bike at 30 mph.
Moving forward is not easy. This beautiful woman's words having meaning for all of us. Breast cancer was scary, but nothing like being told you have six months to live from new rare cancer. Nothing like, even today, when my doctor tells me I am in the two percentile of survivors with a similar diagnosis.
Cycling gave me a life of adventure. I have a long way to go in dealing with my fears. But at least I am headed in the right direction. I have overcome many fears, but the most traumatizing ones are as strong as ever.