Choose joy journal: During physical therapy last week I got my knee flexion to 100 degrees. The rehab following my knee and arm surgery I had on Aug. 1st has been very difficult and painful. After I told My PT Peter about the results of my brain MRI, he thought maybe he should back off the knee exercises that day. I told him that if I was going to have future balance or brain issues, I would need a good knee. So we enthusiastically continued the aggressive exercises that are so painful. During one prolonged painful stretch, Peter searched for something to distract me from the pain. He saw this book and it did the trick.
About a month ago, a friend visited and gave me this journal book. It has a prompt at the top of each page that asks a question about an experience or memory from your life from childhood through the present. He told my daughter Christie (who helps me with exercises each day) to ask me a question from the book that I could answer with each stretch. It reallly helps distract me and we make good progress with my knee range of motion.
When my son Ryan heard about what we were doing, he showed up after work with a recording device and pulled Christie aside. We were all a little anxious about the gamma knife treatment I would have later that week. Ryan said to Christie, “get as much recorded as you can, Mom might not have a memory after Thursday!” Of course that was not the case as the gamma knife spared all the healthy brain tissue!
What an experience it has been reliving my life! I have had memories come to me I had long forgotten.
To all of you who think it sounds like I am doing things that people do before they die, NOT SO! I am not dying today. My medical team and the prayers of all of you have extended my life already. I am ready for whatever my future holds. And I am amazed at the ways the Lord through the ministering of all of you is providing me with moments of exquisite joy literally in the midst of great pain. Thank you Heather Spears Olsen for the journal book!
Legacy
Faith to take the next step
It is the eve of yet another surgery. I am prepared. I have done all the pre-surgery testing and I have been “approved” for surgery tomorrow. I met with the nurse and anesthesiologist. They remembered me from the hip surgery, so we are just getting the gang all together again. My surgeon has studied my CT scans and knows the approach she will use. I have frozen soup and muffins in my freezer prepared by angels on earth from my recipes. My bag is packed. Friends are praying for me. I feel the love and prayers of friends, family, and ancestors. My entire family is here. My home is filled with love. I am not afraid, just ready to get this show on the road. As I was packing, on my desk I saw this picture of a pioneer girl walking along a path. The artist, Salvador Alvarez called it, “Joy in the Journey.” He painted a series of pioneer paintings for his joy in the journey collection. I wrote him an email and asked for permission to purchase a digital picture of this for this blog. He gave me permission and gave me a digital print. Here is the link to his website; https://salvadoralvarez.com/ He explained that he had often seen pictures of pioneers but they were always depicted as suffering and sad. He wanted to paint pioneers with joy because he knew that they must have had joy along their difficult journey. Of this picture he said, “A brightly clad pioneer girl walks with purpose along a path of filtered sunlight. There is a briskness in her step and a joyful anticipation of the road ahead as she moves forward with the perfect brightness of hope”. I come from a heritage of pioneer ancestry. I have their grit, determination, faith in God, and hope in my blood. They left me a legacy that gives me strength to continue this cancer experience one step at a time with faith, even though I may not know what I am stepping into, or what I will experience next.
I compared Salvador Alvarez’ painting with a painting I did at one of those classes where a teacher helps you paint a painting. I am no artist and I did not initially intend it, but my painting became a representation of the beginning of my cancer journey. I painted the large red/black brush area to the right on the bottom much more prominent and menacing that the original photo I was copying. To me it represented my primary kidney tumor. The red all over the picture to me represented metastasis to other areas of my body. The girl at the bottom is me as I am prepared to take my first steps along this scary unknown path. I am standing in the dark. I remember seeing the white area in front of me that kind of looked like a path and I thought, “there will be light along the way, I just have to find it.” There is light and joy all around me. I have suffered quite a bit with pain this last week and a half, but the depth of suffering and pain is matched and exceeded in the joy I am experiencing from the faith and prayers of others and the service that continues to be shown to me. A couple of days ago a friend visited and prayed with me. She asked me what I wanted. I told her the Lord knew I wanted these tumors to stop growing but He also knew I will accept it if that is not His plan for me. For today I told her that I want to be able to endure all of this with grace. I am looking at Salvador Alvarez’ painting of the pioneer girl. I hope she can show me how.
Choose Joy Journal: Waiting for Surgery / Legacy
Well, I am just enduring til surgery Wednesday. I don’t need a clock because my left leg screams at me with pain every 4 hours on the dot when the narcotics wear off. Choose joy journal: my Mom came back and brought a stack of old pictures! Loving the one with Curt and the kids on the golf course in front of his parent’s cabin on a Sunday. I made Christie’s little sailor dress and hat. She can’t wait to rip it off! Then there is a big picture of my whole family at my brother David’s mission farewell. My daughter Christie is wearing a tomato dress I made her. The oldest picture is of my family when I was a little girl. I’m wearing an apple dress my Mom made me! Legacy!
Operation Humpty Dumpty! Rallying the Troops, Getting Prepared.
Operation Humpty Dumpty is fully engaged. Surgery date to repair my broken upper left leg and my almost broken upper right arm has been set for August 1st, 2018. I spent a couple of days thinking about my situation and the upcoming surgery. I had some waves of grief that I don’t have a healthy body. I have a broken body and am very sick even though I look great. I felt some dread and anxiety about another surgery and rehab. It started to became overwhelming and then you came and ministered to me with a steady stream of amazing acts of service that helped me stop worrying. So I got to the work of preparing and rallying the troops. I have written previously about legacy. Me leaving a legacy, but also the legacy that I have received from my ancestors. One legacy that I have received from my ancestors is the principal of work. My family and extended family all have a strong worth ethic that comes from our pioneer ancestors who had to work or die. I recently read a facebook post from my cousin who owns a house that she rents. Apparently her tenants completely trashed the house and the damage was extensive. I read about how my independent and hard working cousin felt overwhelmed as she looked at the enormity of the clean up and repairs that needed to be done. She wrote with gratitude about asking a friend for help and the amazing work she and others did to repair the home. It reminded me that Heavenly Father wants me to ask for help too. It can be hard to ask for help for fiercely independent people like me and my cousin. I am learning to just get over it. I still value the principal of hard work, but I don’t have to do it alone.
So I opened my computer and sent an email to some friends for help with preparing meals because it is hard for me to stand and prepare meals now, and will be as I go through the rehab process. I was overwhelmed to have 14 women immediately volunteer telling me they wanted to help. I decided that since I am now eating whole food plant based meals (WFPB) it would he harder for people to know what to prepare so I decided on recipes I knew I liked and had another friend purchase the ingredients from the store for me. Yet another friend came over and helped me create recipe and ingredient kits like the home meal prep delivery things you see advertised. Easy Peasy! They all came by the house, picked up a kit to prepare and freeze, and now I’ll have amazing squash soup, chick pea noodle soup, and sweet potato muffins for days and days. And I was so surprised to learn another friend had started eating WFPB food like me! She brought me these almond chocolate truffles from the “How Not to Die Cookbook” (pg. 187). I had not tried that recipe. THEY WERE GREAT! They are made with dates, cashews, almond butter, cocoa powder, and vanilla. She brought over this “No tuna” salad from the “Eat To Live” website and I ate it tonight. I’ll need to look it up because it was AMAZING!!! She said it has chick peas, Tahini, celery, pickles, onions, and capers. I told her that I would lick her plate of any leftovers whenever she had any! I heard again and again how happy people were to have something they could do to help me. One woman said when she read my email asking for volunteers she said, “pick me, pick me!” I am overwhelmed. I am learning that sometimes all you have to do is ask for help. I do not have to suffer alone because I am not alone. It is a constant theme I am learning again and again. I am one blessed woman.
I have written about how I prayed to know how I should feed my body and what I should eat. I am now praying about what I should feed my mind and soul. This cancer is tricky. I had pain from my nephrectomy surgery, then hip replacement, then spine, etc. etc. and I wondered if I would ever feel normal again……and then, I felt good! I could drive a car again! no pain, almost normal and then in an instant it seems, I have a new struggle. I was enjoying having some independence, and creating a new sort of life with the freedom to get in the car, go grocery shopping, you know normal stuff. Now I am home bound and just waiting for the next surgery. The TV shows are all the same and they just distract me and suck away without offering me any nourishment or healing for my mind and soul. When I am sad, they offer me nothing. I had a visit recently from a friend I had not visited for a while. She is a musician. She gave me a card with a message of hope, and we just visited. While talking with her I was reminded of how much the Lord has blessed me and given me comfort through music. For the past 2 days I have not turned on the morning show TV blah blah blah and instead listened to music that uplifts. Secular motivating, pop, country, folk, as well as Mormon Tabernacle Choir, other spiritual music including various Christian artists, and my sister Cherie Call’s music. It is nourishment just as important for my healing as the food I am eating. I am spending more time reading scripture. I am enjoying visiting with friends via text, and in person. I told one busy working friend that she could help me by texting me something that would make me smile. Could be a quote, or uplifting meme, a favorite scripture, or just a funny utube cat video. I have 5 more days of pain, and empty quiet in my home to get through until my next surgery, and I don’t want to get sucked down into a bad place again in my mind. I have laughed and smiled everyday as I read what she sends me. I cannot be sad and read her texts at the same time. What a precious gift.
So for operation Humpty Dumpty, we’ve got the food planned for physical nourishment, I am working on filling my mind and soul with uplifting music and thoughts. And my hair stylist friend Effy covered the “looking good” part of the preparation. Yesterday she came to my home and cut my hair. Because if I look good I feel good. Thank you Effy (excuse the blurry picture).
I treasure every visit, text, card, meal, and act of service. When I write about things you have done for me I am not writing about every thing. There are other things happening, and I just can’t list them all. It isn’t about a list anyway. Although service can be many different things, it all has one thing in common, Love. You are sharing your love, and reminding me of God’s love. I am learning from all of you how to minister to others. This new Fresh Hell I am experiencing is constant pain, being homebound, having nothing but time but being physically unable to do the things I would normally do to stay busy. I am ready for my upcoming surgery and look forward to it. I am not afraid, I am finished being sad for the moment, and want to thank you all for being part of my Operation Humpty Dumpty team. I look forward to eventually being free of pain, until the next thing comes up. But when it does, I know I can ask for help and you will be there. What an amazing thing to know. I do not have the words to express my gratitude.
Gifts of Love – You are helping me choose joy
I have shared before that cancer is “one fresh Hell after another.” I am dealing with grief and sadness as my counselor told me I will continue to experience throughout this journey. She helped me figure out how to let the expression of sadness come, but not to get sucked up in constant sadness. She encouraged my choose joy journal and I had to figure out a way to choose joy. It continues to be a challenge sometimes, but you are helping me so much. Today you showed me again how to give gifts of love and to just serve. Read on because this is how you minister as Jesus did. Today this sweet friend stopped by for a visit. She brought me some stuffed animals that you can record your voice in. She said she has had them for a while and was apprehensive about giving them to me because they might make me feel sad. Just the opposite! I told her about how my counselor and I discussed how I have the opportunity to leave a legacy. What a perfect thing for leaving a legacy for my future grand kids. I plan to make a box of things from grandma for them so they can remember me. I can make quilts and put these adorable stuffed animals in the box. Perfect! Later These two handsome young men came by to administer the ordinance of the sacrament because I was not able to attend church yesterday! They reverently knelt around my coffee table, broke bread and poured water in a little cup and covered it with a white handkerchief. They blessed the bread and water and reverently served it to me. Electricity moved through my entire body as the spirit of God filled the room. I hugged them and told them they were helping me so much. I told them that they are an important part of what I am calling, “Operation Humpty Dumpty.” My doctors will do the surgery on my body to repair my broken bones (They are much better than all the kings men). These young men are helping me stay spiritually strong by making sure I am able to participate in the ordinance of the sacrament, renew my covenants, and feel the blessings of Christ’s atonement.
In the mail I received thoughtful cards. One was from more friends, my work family from the Cranial Technologies clinic in Dallas. It had this ornament in it. I was so surprised and touched because I am on long term disability and am no longer employed by the company. I received a similar card from my manager and the Fort Worth Cranial Technologies clinic a few days ago! It had this ornament in it. At work when someone had to be let go or when they chose to leave, sometimes it felt to me like they got “poofed!” Business went on just as it always did day after day, just without the employee. When I went to visit the Dallas clinic recently and removed my stuff from my desk and my PT license from the wall I felt like I was being “poofed.” I knew my coworkers loved and missed me, but as I listened to them talk about the day to day excitement I had missed, I was surprised at how much I missed being at work. What joy to know I wasn’t “poofed.” They love me and I love them. What a great company to work for.
Early this evening This good friend came by and installed a Ring doorbell that will let me see who is at the door and talk to them with my phone. The doorbell was given to me by someone else! He brought some squash soup his wife had made from a recipe I gave her (more on that part of Operation Humpty Dumpty later – helping me stay physically strong). These acts of service are helping me stay mentally strong as they bring me great joy. They help me choose joy because you are bringing joy right to me.
Lastly, I need to make a confession. I have a problem. I have an addiction and am afraid I need an intervention. I love ordering online and have been doing a little too much “retail therapy” to help cheer myself up. It is important for me to look good to feel good and it has helped me get through this cancer experience. I have purchased clothes from Macy’s online, and other clothing sites, and I joined Nordstrom trunk club. Nordstrom gives you a stylist who fills a trunk with beautiful Nordstrom clothes. Your stylist mails you the trunk you try them on in your home, keep what you want and return what you don’t. And you can get anything from Amazon! Food processor, cook books, air fryer, high speed blender. . . Boxes on my porch that bring me happy adrenaline and feel good endorphins. My Mom exclaimed, “it’s like Christmas everyday!” You know the saying, “you know you have a true friend if they will help you get rid of a dead body?” Well, online shopping boxes aren’t a dead body, but they are evidence of my addiction that I do not want my husband to see. I have two friends whom I trust enough to keep my secret and get rid of my boxes. I realize that some may say these are enablers, I choose to say, true friends! And having two means that one is usually always in town! If Curt reads this blog then the secret is out (who am I kidding. He knows), but I’m trying to overcoming this problem. I even sent this Nordstrom trunk back without opening one thing in it. I really couldn’t physically stand and try any of them on with my broken leg and my almost broken arm, and you have 4 days to mail it back. I called my friend and she came and removed the evidence and prepared the box to send back. This friend brings me such joy. I can call her day or night and she will be here for me as fast as she can get here. You are all important people on my Operation Humpty Dumpty team. And you continue to show me how to minister. I love you all so much!
“When All Else Fails ” or “When Life Gives you Lemons” or “Legacy”
Now that I’ve passed the 6 month mark since my diagnosis, I find some people interact with me differently. Initially, I got a lot of pity, or “I’m so sorry” looks. I don’t look sick at all so at first nurses and healthcare workers greeted me with warm smiles. As soon as they read my chart, they usually said, “you have a lot going on.” and then I got “the look” the look that said, “you are really sick. I am so sorry for you.” They couldn’t help it. Their eyes betrayed the smile on their face. I got used to it. I also got the look from friends who have lost a loved one to cancer. They knew what was ahead of me and knowingly gave me “the look.” They gave me great support at first, but now instead of “the look” of understanding and pity, I get a confused look. I do not meet their expectations. They thought I would be dead by now and they don’t quite know how to face the reality that I am doing well. It must be hard to see me doing well and think of the loved one they lost. I get that. I don’t want to be someone who brings pain. I joined a support group on facebook made up of people with stage 4 kidney cancer. It brings me hope because there are quite a few who are still around after 7-10 years with a stage 4 diagnosis. There are 3 others however that were diagnosed the same week as me with similar presentation, metastasis to bone and lung. Two of them did not have their primary tumor removed. none were treated with the immunotherapy I am receiving. All 3 have died. The first oncologist I met with gave me 6 months to 2 years. He explained how sick I was and gave me very little hope. He wanted my blood for research so “others don’t end up like you.” This oncologist shall remain nameless. I did not stay with him. Here is a picture of my current oncologist Dr. Kevin Courtney. Dr. Courtney is always very conservative. He gave me hope! He along with the rest of my team are treating me aggressively and I am getting better. He is smiling in this picture as we had just gone over the latest CT scan that showed my tumors were shrinking with some gone. He cautiously told me that, “the best scenario for me is that in a couple of years I will STILL be doing OK.” I’ll take it!
Here is a picture of my urologist. Dr. Aditya Bagrodia. He was the team leader for my first big nephrectomy surgery. He lead a team of 3 that included a cardiovascular surgeon and a liver surgeon. He was worried before the surgery and made sure I clearly understood all of the risks. He told me again and again that I could die, and that if he got in there and it looked too dangerous, he would stop and close me back up. He is smiling in this picture because the surgery was a great success and this was a follow up visit. I told him that when I first met him, “I did not know how sick I was.” He said, “I knew it, I knew it.” How grateful I am that he took a risk and removed my kidney and primary tumor. My prognosis is good because of him.
A couple of weeks ago I went to a wedding reception and saw people I had not seen in quite a while. I spoke to one couple who did not know about my diagnosis. We had a good polite conversation. Later in the evening, they came back to talk to me. Someone must have told them about my diagnosis. They wanted to hear every detail of all of the terrible pain and side effects I was experiencing. It was like they suddenly came alive and they reveled in talking about the terribleness of my diagnosis. It was not a healthy conversation. I quickly stopped the conversation and told them that while I had experienced pain, I was not now and I am doing well. After that, they seemed to have nothing else to talk about. To be sure, I am not ignoring grief and pain, and I do have dear friends who listen when I need to talk about that, but I choose not to get caught up in it. When I met with a counselor, she told me that people get in trouble when they ignore grief and pain. They also get in trouble when they dwell in it and can’t get out of those feelings. She said it is like waves in the ocean. Feelings will come and go in intensity and we need to acknowledge them. But we also don’t want to get carried out to sea so far that we can’t make it back to shore. During this conversation, I felt like I was getting carried out in the sea of pain, grief and depression, and the couple I was talking with seemed to like it out there! Another friend told someone else she did not think I’d live longer than 5 months. Now that it has been over 6 months I don’t hear from her anymore. Strange. People deal with grief and pain in different ways and I think somehow I am a trigger for other’s feelings about cancer, death, and dying. And I am not fitting the mold. I am not dying today!! This morning I had a wonderful visit with Keri Allred and Chari Terry. They both understood me and were able to hear the not so good things I am experiencing, while rejoicing with me about the miracles I experience daily. I felt uplifted after their visit. Thanks Keri and Chari!
My counselor told me that I have the opportunity to leave a legacy. I have given that more thought over the last month. What will be my legacy? What do I want my grandchildren to know about their grandmother?
- One thing I thought of is education. I worked hard so that my children could graduate from college debt free. I am currently working on finishing my PhD. I want my grandchildren to know that I value education and that it is never too late to further your own education. I decided that if I don’t live long enough to use my retirement money I have accumulated with Cranial Technologies, I would like to have that money in a trust fund to be used by my grandchildren for their college education. I plan to meet with a financial expert within the next few weeks to get that all set up.
- Learning from mistakes. My mother taught me this. She also taught my children this. We have an inside joke “when all else fails…..make a bush.”
My mom likes to paint. When my kids were little, she was painting with them. She painted a large tree and meant to paint a beach ball lying next to the trunk of the tree. The ball did not turn out so she said, “when all else fails, make a bush!” Then she painted over the ball and made a bush next to the tree. I would like my grandchildren to know that if we aren’t making mistakes, we are not learning or growing. There are never just mistakes, but there are learning opportunities. I would like for them to be able to be flexible and make the best out of mistakes. Knowing how to make something good out of a disaster is a good skill to have. My mother had it, I think I am able to do this most of the time too. Here is a picture of my mother holding a picture of a butterfly she painted. My mother is beautiful like this butterfly she painted. She has overcome trials and great difficulty in her life. She overcame a painful divorce. She is a breast cancer survivor. She is a miracle. She is a fighter. I am my mother’s daughter. We don’t give up. We make the most out of whatever life throws at us. We learn, we fight, we work very hard, we are flexible, we make bushes out of beach balls that don’t look like beach balls. Our picture may not look like we thought it would at first, but it is beautiful. My mother’s life did not turn out at all like she thought it would. But it is beautiful. I have this song on my infusion playlist: “Lemonade” by Alex Boye. It may seem cheesy, but I love the message. Life gave me a bushel of lemons. I am enjoying some sweet lemonade. “You can be bitter or you can be better.” “I used to be bitter, now I am better”. Here is the utube video of the song. https://www.youtube.com/watch?v=xS0uS8Tfyt4
3. Here is a picture of my mother-in-law Patsy. She passed in April 2011 after a long battle with breast cancer. She taught me to enjoy each day and to be grateful for every blessing. She left me that great legacy. She is beautiful inside and out. Patsy loved glass jars of every kind. She saved pickle jars, mayonnaise jars, and mason jars and kept leftovers in them. With my new eating plan, I make batches of beans and rice and put them in mason jars in the refrigerator. When I look in my fridge at the mason jars full of food, I think of her. I feel her with me in my cancer fight. I know I am not alone. I know Patsy is with me as are many others. Patsy never wanted anyone to carry too much. We spent many vacations at the beach and all of us carried chairs and food. She always took something from us so we did not carry too much. If she was at the grocery store with us, she always took some of the bags of groceries from us so we did not carry too heavy a load. I know she is lifting this cancer burden with me. My load is light because she is helping me carry it! I am not alone. I would like my grandchildren to learn from this. I would like to leave the legacy of “lifting” the burdens of others. I hope they learn to notice other’s burdens and step in to help lift them. Like Patsy did. Like I have tried to do.