Archive for February, 2015

Best sunshine ever, being HOME!

February 27, 2015

A home healthcare which is not a home HELLthcare! Would you believe a real nurse came over and reviewed each medication with me and spent 2 hours with me and a real PT who evaluated me with no surprise of weakness in legs followed by the lecture that just because you feel 1000% better in mind, you must allow your body to heal. You all know I have no time for that, but okay I listened. All this real home care and more! A call from a nighttime on call nurse who said if I need anything to call, but explained that she mostly does a lot of talking and not medicinal support as late nights are difficult for the newly home patients. Don’t I know it! Besides waking up automatically at 12,2,4 for my vital signs only to realize that I am home, I completely understand why people who return home from the hospital don’t sleep.

Being home even though stairs are my next challenge, having my dad here with me along with the best boys ever, and all of you an email, text away, is best medicine ever. I’m currently in chemos land with many visits from the team of home healthcare. I must learn how to eat with having a colostomy with a visit from a dietician this morning. I’m learning salads will not be my friend which saddens me, but I’ll eat anything to be here and enjoy good days.

Biggest issue is no clothes that fit, so lucky my baby sister who takes me shopping via FaceTime is a huge help along with other excellent shopper friends. It is hard to be a midget and flubby without muscle tone. It just isn’t a category in old navy.

Best sunshine of my day yesterday was standing and cutting an apple for Alex for a snack when he complained that when he cuts it, it just isn’t the way I do it. Best sunshine coming home was seeing the booklet made by Kelli Clifford who compiled the best of my blog plus photos into this booklet that I can bring to chemo or mail to people around the world. Best sunshine this morning, Alex having a bad hair day and asking me if I can help even though I’m not a hair stylist which I explained I styled many a Barbie hair. We won’t share with him that I cut all their hairs off eventually! Best sunshine moment yesterday was real Starbucks coffee and a croissant.

So, my days are filled with pills and home health visits and naps. My goal is to get upstairs AND exit my house just to walk maybe to Tiff’s?

Thanks for all your prayers and continued support. As always contact Tiff for any questions since I’m not answering my phone much or looking at much online….soon, but not yet.

My message of the day…be kind to others, stop and take a breath, live in the NOW, find your sunshine which can be the simplest of things, say thanks, and know there is always someone who may have challenges which you may not be able to see…just please don’t get caught up in the small stuff. No one is going to care if your house is spotless or if the piles on the counter are growing…it all gets done eventually. I’m looking out the window seeing a lot of sunshine and listening to French radio trying to remember the words which were part of years of Club Med days…great memories. Find your sunshine! I have found mine just being home!

 

A letter from Joanie

February 19, 2015

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