Choose joy journal: This little boy prays every night that “Sister Shill can stay alive!” Yesterday we took a picture together. He is an important part of my team. As are all of you praying for me. It has been 6 months since my diagnosis. The first oncologist I saw gave me 6 months to 2 years. This is a celebration picture! I feel better than ever! And I am alive!!!!!
Choose Joy
Choose Joy: Hair! (Originally posted on Facebook June 2, 2018)
Choose joy journal: This just happened. I got my hair cut with partial highlights from Masud at the Artistry Salon at Willowbend Mall. Masud was my go to hair guy before my diagnosis because no one did a better job at my highlights and cut. I was not able to get to his salon since I got sick and I had not seen him since September. When he saw me he asked me how I was doing and that he hadn’t seen me for a while. I asked him if he wanted the real answer, or the “I’m fine.” answer. Pause…. I gave him the short, “I have stage 4 cancer” answer. He gave me a hug and over the course of doing my hair I gave him the longer more detailed answer. And we talked about food! He and his wife were interested in my vegan diet.
I believe that the spirit, mind, and body are all interconnected. In fact, years ago after my parents divorce I spent 13 years feeling very sad. It was reflected in my body and I got the flu and colds a lot. Finally when I started to pray about how to address the sadness, and with a nudge from a kind bishop, I received a miraculous healing of my spirit and I finally had joy. And I stopped getting sick, (until cancer of course) So I thought I had learned all I needed to know about the healing power of the atonement.
After my diagnosis I asked myself, “what does God want me to learn from this.” And boy am I learning! About ministering, relationships, what is important and what is not, appreciating blessings I had taken for granted, deciding if I want the remainder of my life to be filled with sadness or joy. How the Lord fights my battles if I let Him, how with the Lord I can be strong, but alone, I am weak. With Him nothing is impossible, alone, this is impossible. And more about the atonement? Physical healing? Time will tell but I am getting a glimpse as I start to remember what somewhat normal feels like. I am at peace with whatever the future holds, and according to my first oncologist, I could have been dead today.
Mind, spirit and body connected. Sometimes you have to fake it til you make it. I told Masud that if I looked good I would feel good. And I want my body to use its energy to fight cancer, not, “I feel ugly and sad” feelings. He is an important part of my team. So we took pictures together with him and his associate Grace, who helped style my hair. So if you are feeling sick, maybe get your haircut, or a new outfit. Your mood will be elevated. It’s a start!
Another Tender Mercy!
I have been struggling with muscle spasms since my vertebroplasty. It is a temporary thing, but frustrating. Yesterday I reached up and picked up a mason jar full of rice from the top shelf of the refrigerator. My back did not like that and I dropped the jar shattering it. I cried. My daughter Christie cleaned it up and I’ve been taking it easy in bed today (my back is doing a lot better). Today the doorbell rang and a friend I have not seen in a while brought me this! I was sleeping so I did not get to see her, but this was another tender mercy from the Lord that lets me know I am loved. Do you see the vase of the flowers? It’s a mason jar, the exact size of the one I dropped! And I’ll bring the angel with me to my infusion.
One fresh hell after another OR One tender mercy from God after another OR you are God’s hands
I am currently reading a book called “Radical Remission: Surviving Cancer Against All Odds” by Kelly A. Turner. The author obtained a master’s degree in oncology social work and specialized in counseling cancer patients. For her PhD she did qualitative research and interviewed people who survived stage 4 cancer when no one expected them to live. She was surprised that when talking with oncologists, all of them could recall a patient who had had a radical remission, and some cases had been quietly published in medical journals, but no effort was being done to track this population or do much research on them. While I don’t agree with some of the decisions some of the patients she interviewed made (like abandoning conventional medicine in some cases), I found the data that emerged from her research interesting. She found that ALL of the radical remission patients did 9 things. A chapter in her book is dedicated to each thing. I have been amazed as I read each chapter at how I have been guided to do each of the 9 things. Some of the things I can see I was preparing for and learning years ago. As I have said before, I am at peace if I don’t beat this cancer, and the odds are certainly against me, but I’m fighting to live and am definitely not dying today! I could do a post on each of the nine things (interestingly the first thing everyone did was radically change their diet! check!, the second was taking control of your health and changing doctors if needed, check!), but today’s post focuses on releasing suppressed emotions, increasing positive emotions, and embracing social support.
Releasing suppressed emotions: I mentioned in a previous facebook post that years ago when my parents divorced I struggled through 13 years of depression and sadness, and I was always sick. Step by step the Lord helped me learn how to apply the atonement of Christ to obtain spiritual and mental healing from that pain and in turn, my body and immune system was much stronger! So I thought that was all He had for me to learn about healing! Here I am now learning more. That experience taught me that holding on to negative emotion harmed me physically. Ms. Turner in her book cites studies that found this mind and body connection to be true. Negative emotions put the body in “fight or flight mode” and it can’t be in this mode and in a calmer healing mode at the same time. She cited examples of how her radical remission patients released negative emotions. Many had the help of a counselor. Today I called my oncology counselor and made another appointment to meet with her. She helps me take baby steps when I am ready. I am ready to take another step in dealing with all of the emotions that my cancer journey brings (funny, I always hated when people used the word, “journey”. It seems so overused. but this is definitely a journey).
Increasing positive emotions: Ms. Turner learned from her patients that releasing negative emotions was not enough. All of her radical remission patients made efforts to have some form of positive emotion each day. She cited studies that found healing hormones increased and the immune system was stronger with positive emotions. One of the patients she interviewed scheduled two appointments each day with her daughter, to “be funny, or tell each other jokes.” At least twice daily she laughed with her daughter. Other patients found something to be joyful about each day! Choose joy journal! Check! (If you don’t know what my choose joy journal is, go to the choose joy tab at the top of this blog and read it). Yesterday I had an appointment with my oncologist. My daughter Christie came with me. How grateful I am that she came and I was not alone! I remembered that when I first started going to UTSW in December after my diagnosis and before my nephrectomy surgery, I became physically nauseas and threw up before every visit. I don’t do that anymore, but there is always a little anxiety. I usually listen to uplifting songs from my infusion playlist on the way down. Yesterday I made a little game out of it in order to bring some fun and positive emotions. I set 4 goals for the appointment. 1. get Dr. Courtney to smile. 2. Get approved to have my infusion appointment tomorrow (today). 3. Get a smile from the valet driver, and 4. Bonus if I got a selfie with the valet driver! Game on! At the cancer clinic, the first valet woman was named Deborah (emphasis on the second syllable). She smiled warmly. Check! I did not have time for a selfie, so I remembered her name so that maybe I could get one after my visit. During the visit I did not have to even try to get Dr. Courtney to smile. He smiles alot more during our appointments and today gave me a warm smile. Check! Unfortunately, he did not approve me for the infusion the next day. I have been dealing with an autoimmune rash that has been just tortuous. I had to have a second month of steroids and he said I would not benefit from the immunotherapy while I am on the steroids. So the infusion is postponed til Monday. The sad thing about that is that I was planning on going with Curt and Christie to Arizona for a couple of days to see my family, and then to San Diego for a short vacation. I was looking forward to it. But my health is my top priority and I need this infusion as soon as possible. So I will not be going on vacation. I have been a little irritable this week because ever since my vertebroplasty surgery, I have had constant muscle spasms in my back and pain always makes me irritable. Especially pain that is constant. I told a few close friends that this cancer stuff has been one fresh hell after another. First pain in my hip, then pain after the nephrectomy surgery, then pain after the hip surgery, then joint pain from the immunotherapy, then this tortuous rash, then pain in my spine and other hip, etc. I told Dr. Courtney it is overwhelming sometimes that it is one thing after another. He sympathized and gave me a prescription for a muscle relaxer to try (tried it, didn’t work). Narcotics help some, but I don’t want to be a zombie. Anyway, moments before I learned I would not be going on vacation, God must have known I needed something to cheer me up and a new social media friend posted a selfie of her with 2 sister missionaries. One of them was my niece! I have never met Vicki, only conversed about cancer through social media (she had just learned she has lung cancer and started following my facebook page and blog). What a tender mercy from the Lord! My smiling niece I have not seen in years looking at me through my phone. Here is a link to that facebook picture https://www.facebook.com/photo.php?fbid=2009189059151205&set=p.2009189059151205&type=3.
After the appointment we went to get the car and I was still feeling a little down when I remembered the goal to try to get a selfie with the valet driver. I was not really feeling up to it, but dang it, I’m competitive and it was a game! So I lost my ticket stub in the abyss of my purse and the valet guy was nice, but said he is supposed to ask for it. I told him that he was the first valet guy to ask and he said he was trying to be a good example for the other drivers. I told him I admired his awesomeness and diligence to be excellent at his job. I asked him if I could have a selfie with him! he smiled and I got this very unflattering selfie (note to self, learn best selfie angles)! Selfie with valet guy, Check! 3 out of 4 goals met for this visit is not bad.
Embracing Social Support: Today I received an email that brought more tears of joy. Another tender mercy from the Lord, and an example of ministering I am receiving from friends who I have not seen in a long time because we live apart. I have been friends with Deborah Larson for about 35 years. We were friends in high school and she was Deborah Benson then. I have not seen her for years. She does not do facebook, but learned about my cancer diagnosis and sent me an amazing email. She said she was going to run a half marathon at a race that was raising money for cancer. She was dedicating the run to me. Today she sent me this amazing picture of her after the half marathon! She wore my name on her shirt.
I am overwhelmed at the love I have for and am receiving from my friends. It is about people! Tell your friends you love them as much as possible! I want all of you to know I love you. And you need to know you are on the errand of the Lord. You are his hands, and his legs and his feet! This cancer can seem like one fresh hell after another, but I am learning that is is also one tender mercy from the Lord after another!
Finding Joy amid challenges AND what I have learned from cancer and from you about ministering
Choose Joy Journal: “When you know your life is being directed by God, regardless of the challenges and disappointments that may and will come, you will feel joy and peace.” President Russell M. Nelson
I heard this quote at church Sunday and it really spoke to my heart. I realized that it took me a few months since my diagnosis, but I am now at a place where I know without a doubt that my life is being directed by God. I no longer have any fear about any test or procedure, and I am at Peace with whatever my eventual outcome is. He is with me as I fight this and with Him my burden is light. That release of fear and anger and other negative emotions allows me to have joy. I am able to identify something everyday that brings me joy and the joy is helping me heal. I have moments where a wave of grief about the loss of the life I had expected and the complete change my life has become comes over me, but then I move on and the sad moments are fewer and fewer. What an amazing thing to experience. For more information about the back story about my choose joy journal, click on the choose joy journal tab at the top of the page. Initially, the thought of the choose joy journal did not bring me joy! In fact I was mad! Looking back, I think God gave me a much needed kick in the pants that I had more growing to do.
Later at church in our women’s meeting we discussed again what ministering is and what it should look like. You all have taught me beautifully as you have ministered to me. Before starting this blog I posted a lot on Facebook. Here is a previous post about ministering I originally posted on Facebook.
What I have learned from all of you and from cancer about ministering (written on May 4, 2018)
When I was diagnosed with cancer I reflected on why and decided that while I thought I had learned from going through trials in my life previously, God had more for me to learn. From past trials I learned empathy for others, how to pray and rely on my Heavenly Father, how to forgive others who had hurt me, and how to let the atonement of Christ heal me from that hurt. It took years and years to learn some of those things and I experienced miracles. So now I have been thinking, “what does Heavenly Father want me to learn from this? What am I learning?”
In the church I belong to, The Church of Jesus Christ of Latter-Day Saints, we have a bi-annual general conference. In April, the president of our church announced a change to a practice we have been doing for more than a hundred years. It is called “home teaching and visiting teaching.” All of us were assigned people and families that we had stewardship over and we were encouraged to visit them once a month. We had a monthly message that we shared at each visit. As we developed relationships, we were able to serve and help when they needed it. I have made precious friends with women and had life changing experiences as I visited and served the women I had stewardship over. Now instead of “home teaching and visiting teaching” It will just be called “ministering.” There will be no monthly message or directive to visit monthly. Instead we are to “minister”. We heard messages of what ministering should look like. As I listened I felt that if we were truly doing “visiting teaching and home teaching” right we were ministering, but sometimes we (me included) were not doing it right. Sometimes I would scramble on the last few days of the month to arrange a visit, look up the message and leave it along with the worn out saying, “if there is anything I can do for you, let me know.” No more of that. I am supposed to develop relationships, pray about what I can do for the women I have stewardship over, and then do it. No monthly requirement or generic message, just serve!!!!
So what have I learned from you and from cancer about ministering? here are a few things:
1. More emphathy!! Look around and be aware of the people around you everyday. The first time I went for an infusion I did not notice others around me. I was absorbed in my self as I sat dizzy from this new experience. Wednesday was my 4th infusion. As I sat in the waiting room I looked around. There were so many people! Some much older than me. Some with no hair, some like me who may not look like they are sick, but are. One older man sat slumped in his chair. He walked with a walker and looked weak and feeble. I realized that he is anything but a weakling!! He has made it to his old age and is now fighting cancer. He is tough and has grit that I can only imagine! I saw others who were smiling and realized that they may be doing the best they can amid terrible pain, as I have recently done. Sometimes the smile is more of a “fake it until you make it.” kind of a thing. I saw people who were so generous. One man looked bewildered and asked where he could get some of the snacks others were eating. 3 others looked at him knowingly and pulled out snacks from their bags and gave them to him. They had learned that it is important to bring snacks to these infusion appointments that can be long. Sure the hospital has crackers and juice, but an apple is so much better! This man was just learning the ropes of this cancer game and benefited from the experience of more seasoned players of the game. So the lesson to me was, be aware of those around you and share what you have with them. Share a smile, a conversation, an apple, your love. For my friends who share my faith and are thinking of how to minister to those you have stewardship over, I think the first step is to KEEP THEM ON YOUR MIND. Be aware of them and think of them during the day or week. Not just once a month. Notice them and become aware of what is going on in their lives.
2. What to say or do to help.
GOOD: If there is anything I can do, let me know. The person going through a really tough trial appreciates this, but it can be a burden to think of things so that the person who says this can serve. That is why if you have said this (and I have) to someone, they rarely ever “let you know.” Usually the person in need just toughs it out and handles things on their own.
BETTER: I have been thinking of you. How are you feeling? Can I bring you some food? When can I come and visit? Texting, private messages and email is great!
BEST: I made dinner and have extra. Would you like me to bring you some? I would like to come and clean your bathrooms. Would you like me to come and do that for you? I would like to visit you Wednesday at 6:00. Is that OK? If you are not up to it I could do another time. Can we mow your lawn? We would like to plant flowers for you. Can we do that? I am going to the store. Can I pick up some groceries for you? My family has been thinking of what we could do for you and we decided we are praying every night together for you. My kids and I made this necklace for you so that you can wear it to your cancer treatments and not be afraid. I thought you needed something to snuggle with so I brought you this stuffed llama! We made this soft quilt for you. My kids drew this picture for you. Send a box from one of those meal companies that comes prepped and ready to cook. Bring homemade pretzels. Bring homemade bread. Send a box of socks, slippers, magazines, snacks, word find books, and other things that make you smile. Offer to drive them to appointments. Walk with them. Send a beautiful flower arrangement. Leave a vase of daffodil buds anonymously so that the person you are serving can enjoy seeing them open. Make a playlist of songs and help put them on their phone. Offer to help write thank you notes. Send Texts and private messages telling them you are thinking of them. Send hand written cards. Share scriptures that made you think of them. Pray WITH them. If that person asks for recommendations on where to get something they need, GET IT FOR THEM.
BESTEST: Pray about what you can do and follow every inspiration and prompting. You will be sending a direct message from God that He loves that person. Even if the prompting you get seems strange. JUST DO IT.
These are things I have received from you. You have taught me how to minister to others. I have had wonderful texting conversations that I still look at and read. They bring me such joy and inspiration.
3. Just a reminder of what NOT to do:
Don’t tell them what they should be doing, eating, buying from you. Don’t tell them not to complain. Don’t tell them about your friends or family that “had that, and that they are dead now.” Don’t “one up them” and share a worse experience you have had.
4. And one last thing. If you are the person needing help, ASK. Let others serve. I needed grab bars installed in my bathroom for my mother and I. All it took is asking and a few of my friends told me about Plain O Helpers. They are a totally volunteer organization that installs them at no charge. Only the cost of the bars. Two retired men did a beautiful job for me this morning!!!! (today’s choose joy journal entry). With facebook and email, I have learned that all of us know more than just me! We all have knowledge about things that we can share and help each other with. Also, be patient with those trying to figure out how to help. We are all learning how to minister.
Choose Joy Journal: Friends, Smiling Healthcare Workers, Fresh Vegetables!
For the last month I have had a break from immunotherapy to go on some high dose steroids to address an autoimmune type of rash that is a common side effect. I have felt GREAT , normal even (except for the itching). I knew this would not be permanent and this week has been a big one. Yesterday I had a successful spine surgery that I am recovering from. I have some pain but it is much less than from previous surgeries. If there is one thing I now know how to do, it’s manage pain. Today I resumed my immmunotherapy infusions. After an infusion I experience extreme fatigue and joint pain. Basically, I feel like a truck hit me. But I experienced so much joy today! I think these experiences were always all around me, but in February when I began infusions, I was still scared and did not recognize the people around me. I am not alone, and joy is about people! Here are some of the things that brought me joy today, with pictures!
My daughter is home and she was going to bring me to my infusion appointment today. She went to a job fair on Tuesday and happily, received two calls from principals asking her for job interviews today! Of course I told her to do that and I would find a friend to take me. Look who I spent the morning with! Cherie McGregor happily got up at dark o’clock this morning. We left at 6:30 am. She was with me for lab work, an appointment with my oncologist’s PA, and then sat with me during my infusion. We got home around 11:30. I never get the chance to spend that much time with her and we enjoyed catching up. She made the treatments go by fast, and helped make them not bad at all. Thank you Cherie! You are a ministering angel and a dear friend
This is a picture of a huge blown glass sculpture at the cancer center at UTSW. Every time I see it, I think it represents my primary kidney tumor. The color of Kidney cancer is orange. And this thing looks menacing with tentacles reaching out to other places. Yup, it is my cancer. But my doctors and I are kicking it’s XXX.
This is a picture of my oncologist’s PA, Theresa D. Sanders. She is as amazing as all of my other doctors. And so warm and caring. She carefully reviewed my labs and gave me the same expert care I receive from Dr. Courtney, my oncologist. I am blessed.
I have graduated from an individual room to the community room for my infusions. I did not see any sad or scared faces. Everyone in the room are experienced at this cancer fight. They smiled and visited with the people who came with them. And every single nurse was working hard with a smile! they were so busy…. and so happy! The community room is a happy place. I will have to visit this room every 2 weeks for the rest of my life. When I first heard that, I felt a heavy burden. Today, it is doable! It won’t be hard with all of these smiling faces.
My house was cleaned today by Marina, my wonderful new friend who helps me with cleaning every 2 weeks. She worked so hard while I slept and rested. I need to remember to get a picture of her.
Laughter! I woke from a nap listening to boisterous laughter from my son and daughter. Is there any better sound? I love my family so much. I am so blessed!
Farm fresh vegetables!!! John Stoddard got these amazing vegetables from his brother-in-law’s farm. They were extras. He gave them to me!! Broccoli, cauliflower, onions, cucumbers, zucchini! I have been buying these exact veggies. Fresh from John! priceless! Such joy! Thanks John!
It is true, I feel like a truck hit me, but I am also overwhelmed with the service that continues to be given to me. I am filled with joy! How did I miss this before?