Treatment Update
It has been a while since I updated this blog. Here is a summary of my health update. Tivozanib was a good drug for me. It kept me stable for a few months, but sadly, my cancer eventually grew. My oncologist recommended I start two drugs together, Everolimus and Lenvima. He warned me that the side effects would be more severe than Tivozanib. I took a break from treatment for a couple of months So that I could take a trip to see my sister’s family in Utah without dealing with symptoms. It was a wonderful trip! My two brothers and my mother came too and it was good to have my family together. Upon returning home, I began treatment with the new drugs. I did well for about 5 days, but then I experienced severe nausea and dehydration.
The nausea and dehydration was so severe, I ended up in the ER, and then the ICU. My brain was not working right and I was talking gibberish. After flooding me with fluid and correcting my electrolyte situation, my mind was clear again. I decided that the treatment may kill me faster than the cancer. I had been thinking for a few months before my hospitalization about stopping treatment. The hospital experience made me more certain that it is time to stop treatment. My oncologist came to the hospital to visit with me (so great that he took the time to see me in the hospital)! He agreed that it is a reasonable thing to do at this time. I have done five lines of treatment. My oncologist said I tried everything he had for me.
Transition to hospice
During the hospital visit, two different hospice companies sent representatives to visit with my husband and I. We chose one of them and decided that after some radiation treatment, I would transition to hospice. Upon returning home, I had radiation to a spot on my right scapula, and on my right femur. I had been experiencing pain there, and I did not want the tumors to progress to fracture my right leg especially. The treatment was successful, and now I just have some residual right shoulder pain. It is being managed well with pain meds.
I met with my oncologist in his office. He reviewed my labs and said everything looked good. My kidney function was back to normal. He also agreed with my decision to stop cancer treatment. It was a bittersweet moment because I would be getting a new hospice doctor. Dr. Courtney, my wonderful oncologist gave me a hug. I thanked him for giving me 4 1/2 years.
I don’t know exactly what to expect with hospice. Doctor or lab visits will not be necessary anymore. Any treatment will be to help me be as comfortable as possible. So, treatment for pain, nausea, constipation, etc. Some people may think I am quitting. I am not quitting. The cancer treatment drugs will kill me before the cancer does. I am just going to live one day at a time and enjoy my family and grandkids, knowing I have done all I can to fight this awful disease.
Traditionally hospice means the patient has an estimated 6 months or less to live. My oncologist said that that is what they will say, but that they will not kick me out if I live longer! And I do plan on living longer. I would like to live to see my daughter get her LPC license in counselling. She is currently working on getting 3000 hours of counselling done under supervision. I am so proud of her. It will take her a year to finish. I want to be here. God willing, I will. It is all God’s plan now. Everyday is a gift from Him.
Kevin Hinckley says
I’m sorry it has gone this way. You are amazing . I enjoy having Christie in our ward…
Julie Shill says
I am at peace with it all. I have had a good life. I now have time to enjoy my family. I am looking forward to my time in hospice. Maybe people will look at hospice with new insight if I share my experience.
Allison Kendrick says
Darling lady, I so smite you for not only your long fight, but also your grace in joining a hospice. The only thing I can think of was the day I was honored to take Jenna Eldridge to her purple party, that she thought was just a YW party, but was actually just for her, because purple was her favorite color. There were purple balloons, Purple M&Ms etc. on the way there I so strongly felt the Spirit. And got to listen to her experience of meeting the Back Stage Boys, I
Think that was their name. It was through the Make a Wish Foundation.
Then the next was when I felt like I should go to the Eldridge’s, my excuse was that I had some new information about her condition and surgery that was helpful. She had just peacefully passed away watching TV. I was able to give a big hug to Raylene, who said she knew I would come, and then felt like I stood in a holy place as I overheard the remaining children being given a blessing. I hope you have a similar sacred experience. If you want me to visit you, just let me know.
Allison Kendrick says
Admire not smite, geez autocorrect!
Julie Shill says
Thank you Allison
Julie Shill says
Thank you Allison!
Roberta says
Hi Julie I am happy you are at peace with your decision. Enjoy your family. 🧡
Heather says
Julie, you have been an incredible warrior as you have faced each new treatment. I’m not sure if anyone who has followed your journey could consider this quitting. I hope you have all the support you need from the important people in your life around this decision.
I’m hopeful that you will continue to defy the odds as you have so many times before, and that you will remain pain and complication free through this transitional time. 🥰
Julie Shill says
Thank you Heather. It means a lot to have your support along with the support of my family. I’m looking forward to my time in hospice.
Brenda Watlington says
Some of these treatments are so hard on the body, t seems they kill the good cells along with the cancer. I pray for the day we have something better and consider these treatments as barbaric as we now consider ancient remedies like leaching and blood letting to get rid of the infected blood.
We live in faith that you will be comfortable and that your remaining time in this dimension will be much longer than predicted.
Julie Shill says
Thank you, Brenda!
Cherie says
Hi I follow your sister Cherie on fb (great name 😊) I’m also following a young woman on Instagram called bowel babe who is now in hospice care. I just want to say how inspirational you both are and sending love and prayers stay strong
Julie Shill says
Thank you Cherie!
Chari says
So proud of you, my ever-amazing friend!!
Julie Shill says
Love you Chari!
Lynda Brenchley says
You remind me of my husband that fight cancer for many years without it going into remission. He was told when they found what kind and where it was he had only 6 months to live . He just told the man reading his X-rays that he would live to dance on his grave. None of us know how long our life on earth will be but my husband like you have filled that life to the fullest He as you have lived every day to the fullest. You are a wonderful example of a courage and strength to all of us of living life to the fullest . My prayers and admiration for helping many of us to find joy in our life even during very difficult time’s. Thank you Julie for that gift ❤️❤️
Julie Shill says
Thank you, Lynda. Best wishes to you and your husband.
Julie Shill says
Thank you Lynda!
LaRene says
I have great love, warmth, and admiration for you….my beautiful daughter. You mean so much to me….my oldest child. You set the best examples for all of us. You made my life easy….we all love you so much. You have a wonderful family. You and Curt have two of the best kids ever….!
Julie Shill says
I love you Mom
Sharron Michele Crockett says
Reading your blog from a FB group on renal cancer…. We are close to the same boat. We are trying Y90 treatment soon and then we will see. My husband also has Parkinsons and as he says if he survives cancer too long then he will experience the depths of Parkinsons which for him is worse than cancer. We are moving this month to make life easier on both of us. Then we will both focus on the quality of our lives. I am a bit nervous about moving into a new Ward as needy members, lol!
Julie Shill says
Best of luck to you both!
Julie Shill says
I’ll pray for you both!
Lori T says
We love you my friend, and your sweet family is so dear to our hearts. May you find peace in every step of your journey and feel the love, prayers, and support we all have for you. Hospice can be such an emotionally bonding and spiritually enlightening experience for all.
Julie Shill says
Thank you Lori!
Cindy says
G d bless you Julie for all the good you did in our kidney cancer community. I look forward to seeing more of the little girl in the red dress and her new adventures. All my love
Julie Shill says
Thank you Cindy! It is hard for me to set up and put away my paints so I haven’t been painting. Hospice said they would send a volunteer to help!
Fleur says
I’ve followed your journey for a long time whilst my husband was on his.
Our hospice time was very special. Lots of time to spend together in relative peace.
You’re an inspirational lady Julie. Thank you so much for sharing all of your experiences. You have made a difference … love Fleur xxx
Julie Shill says
Thank you Fleur!
Cherie says
Cousin Julie. You have always been an inspiration to me. As a child I got into gymnastics because of the stories our grandma would tell me about you. You have been an example to so many. Thank you for sharing your journey. You are bigger than life. My love and prayers are with you.
Julie Shill says
Thank you. Cherie!
Gemie Martin says
You have a lot of fans (including me) who are in awe of you and your courage. Praying for you to realize your dream of getting to see Christie get her license! I am guessing that will happen!!! Praying for the joy to be great and the pain to be minimal for you. Sending love your way.
Julie Shill says
Thank you Gemie!
Carma W says
Julie, thank you for sharing your ‘journey’ these past few years and especially now. You have my faith and prayers always. I also pray that the peaceful feelings continue to be with you. My mother Lula was put on hospice after stomach surgery in June 2017. A year later, in July 2018, hospice said she was healthy enough so they kicked her off! Fast forward to today – she turned 99 the end of March, she got reinstated on hospice, an aid comes in every week day morning to help her dress, shower two days, and go to breakfast. She is in a care facility in Lindon, UT. Her memory is almost gone, her legs and feet are so swollen, it brings tears to my eyes when I help her shower and dress for Sunday. She has congestive heart condition so I imagine her heart looks like her legs. I wish she could just go to sleep and go meet our dad who died in 1974. They have been apart for almost 48 years now. The trials of life, right? I love you, dear friend.
Avery Simpson says
I love you Julie and I’m so glad that Heavenly Father allowed me to get to know you. Your strength, grace and tenacity are nothing short of amazing. Whatever is next just know that you have a wonderful legacy.