A letter from Joanie

The next bit of info is something you may not be able to read now or like me are in disbelief about how much time has passed and how I miss all of you and love you very much.

I have a million stories to tell about the care or lack of care or calamities or ambulance ride with 3 hunks to UCLA Santa Monica from Hoag. I have not the time nor the energy to tell them all now. Know that is my hope to share my journey as I always have.

On Jan 4, I went for a hike with alex for over 3 miles and ate a burger for dinner. That night I came down with horrendous pain in my abdomen. My Cancer was progressing as we were aware, but I was unsure of this pain. I think it was the 4th when I went to Hoag Irvine ED where my besties greeted me with open arms. Long story, I was there until the 9th where it was determined I would die without the surgery to unblock my bowel covered by Cancer. I would be getting a colostomy. I was transferred to UCLA Santa Monica not ideal but there were no beds. It was a life or death situation and my doc fought hard to fight for the last bed. It was between me and an organ donor. You know me…I thought what happens to that family.

I was at UCLA Santa Monica from the 9th to 2/1. I had a wound infection and was very serious. My body was full of edema. I asked my doc if my body was done even though my mind wasn’t. My doc was convinced it was a difficult road, but I could do it. My oncologist Gottfried Konecny was there for my first bowel movement, came to visit at 10:30 many evenings, held my hand, held a bucket when I threw up. He is one incredible doctor. I cannot explain how difficult it has been for my boys, my mom and sister who were there with me at UCLA for a week. I had great care at UCLA. A harpist, urban zen, teams of docs, but things are complex…then I was released to home healthcare from HELL. These people were idiots. They did not do my wound care and did not handle my pain meds. Too much too soon on my own. I went back to Hoag irvine after Monday last week went for blood transfusion. It was Tuesday night…I came with pain. I could not control it. It has been a mess here trying to find the balance.

I’m now at a very difficult place. I need to get the right care to stay alive for as long as possible. Each day is a gift. My continual message is to be your own advocate and find some sunshine in every day.

I was told I’m in a unknown place with very poor prognosis. I am looking for good days and planning as much as I can with my wishes for my family and for all of you.

Lastly, I ask you to contact Tiff only for any questions or any help you think you can provide my boys, my parents, my sister, her husband and her kids. Please pray for our family. Please know I am not giving up, but the body is tired. I want you all to be there for my family like you have been and I also know that it is not easy for you as it is life shattering for my family. I need for alex to have as many happy days and as much normalcy as possible….so if time works, give tiff a call if you have an idea for a fun outing for alex. Know that my rock star soul mate husband is broken needing “oxygen” on a daily basis as he watches me struggle to survive each day. Jim is my partner, the love of my life, the one who has been there for me every second of this crazy ride. I’m proud of Alex and who he has become. No one can fully understand the love I have for my boys and the motivation it provides me to make these difficult decisions. I’m one lucky gal with wonderful friends, but most importantly a wonderful loving adoring baby sister who will do anything I need, a devoted mom who stayed up for 3 week 24 hours a day until I saw in her eyes that she was wiped out. A dad who has sacrificed so much for me to become the woman I am today.

Please pray for my family. I ask that no matter what happens you will be there for my family every day forward in cloudy and sunny days.

I ask you again to find your sunshine always.
Much love
Joanie

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