I had a great appointment with my oncologist today. Look, he is smiling! And of all my doctors he is the one who is serious and guarded as we talk about treatment and prognosis. We compared CT scans before immunotherapy and now. The tumors in my liver and adrenal gland are gone! Two lung tumors are gone! Others are smaller. Lymph node tumors are smaller! Spine tumors are stable. From the whole body x ray we found I have tumors in my skull and one arm and leg. My orthopedic surgeon will look at them and monitor. The plan is to continue immunotherapy. I also will have a vertebroplasty to inject cement in 3 vertebrae that were radiated previously. I am so thankful my team of doctors are treating this aggressively and did not write me up as too far gone! I told Dr. Courtney about the changes I have made in my diet and he looked closely at my labs and said they looked better than ever so I should keep it up! Glad he is supportive!
Words cannot express how thankful I am for all of you and your prayers. I am not alone in this. You are an important part of my team! And I am so filled with gratitude for my Heavenly Father who is walking with me everyday. Alone I am weak, but with Him I am strong and have a peaceful confidence no matter what is going on in my body. I would not be less grateful if I received bad results today either. I am not walking this valley alone. I’m not alone in this pit! And there is joy in that, I am grateful for this reminder of His love.
Thank you prayer warriors! I love you all! And please if you commented on my earlier post before, comment again! It helps me to read those again and again! You continue to teach me how to love and minister to others by how you are ministering to me!
Embracing Survivorship
Today (July 3, 2018) I had an appointment with my counselor, Sonya Owens, LCSW (here is a selfie we took together)! She is an important part of my medical team and she is helping me deal with the emotions and transitions I am making during this whole cancer experience. We reviewed what we discussed at my last appointment about dealing with grief. We talked more about how I am preparing to leave a legacy, and spent quite some time discussing this new phase I am in and how to move forward embracing survivorship. I feel like I have just been in survivor and crisis mode as I have faced surgery after surgery, and procedure after procedure. I am dealing with some side effects to the immunotherapy, and still recovering from my vertebroplasty. I am not yet medically stable, but look forward to the time where I will move into a somewhat stable mode. I have not been able to exercise and I have become weak. I discussed my plans to begin a swimming program, and some yoga. The interesting thing is that I look very good. When I tell people about my illness and everything I am dealing with people expect me to be bed bound. Some people expected me to have passed by now and it was a definite possiblity. When they see me looking good, then they then expect me to be 100% like I was before my diagnosis. I am in an in between place where I have the energy to do one thing a day (today I went out for my counseling appointment), and then I come home and sleep for a few hours. When I wake, I cook a few recipes, then rest again. I am sometimes frustrated that I can’t do all I would like to do in a day due to low energy levels, pain, and/or weakness. It can be frustrating to family and friends as well. For the most part people are understanding, but it is hard to understand because I look like I should be able to do more. I was planning on going to Arizona and then California on a fourth of July vacation with Curt, but I could not go because I had to wait and do my infusion this week. It ended up being for the best because I don’t think I would have had the energy to walk or even ride a scooter around Disneyland, or even sit on a whale watching boat for 3 hours due to my back spasms. I think it is frustrating to Curt who loves vacations, but he says he understands. Maybe after I get stronger. He is ready for me to be “normal” again. I just don’t know what “normal” is going to look like. To be sure, I am better today than yesterday!
Sonya told me I am doing really well and have done alot of emotional grief work. We talked about how life is a race. Some of us run a sprint, and some run a marathon. It looks like I may be running more than a sprint, and I think I will be around for a few more years vs. a few more months. We talked about how people dealing with cancer have emotions similar to PTSD, but we don’t call it PTSD. Some things trigger waves of “fight or flight”, or “grief/anxiety.” Some talk about being a “warrior”, and I am definitely fighting, but I’m not in that intense “fight” mode all the time. I am living and figuring out how to live with cancer. There is no cure for kidney cancer. I sometimes get “triggered” as I think about my identity as a physical therapist and how it felt leaving work. I may return eventually, but I cried again as I told Sonya about how it felt to remove my things from the clinic, turn in my computer, and remove my license from the wall. I get waves of emotion as I talk about making quilts for eventual grandchildren that I may or may not get to meet. I have two beautiful amazing adult children and I know there is an eternal companion for both of them. I don’t know how long I have left to be here on earth but I believe I will be around for a few more years and will see my kids get married, but I also can accept it if I am not. I will have a better idea about my prognosis in August. I will have another CT scan and diagnostic x ray to see if my immunotherapy is working. We will also look at the bone lesions I have in my right arm and left leg to see if any further surgeries need to be done and we will look at my spine. The big picture is overwhelming and too much for me to think about, but I can take one day at a time, one procedure at a time. That is how I have made it this far.
Sonya and I talked about “scanxiety,” The anxiety I feel after the scan while I wait for the results. She asked me how I deal with it. I told her I always prepare for the worst news so I am not disappointed. We talked about meditation and the research that shows how beneficial it is. I downloaded the “calm” app and have been using it, but I also do some of my own prayer and meditation to calm down when I have waves of anxiety, or PTSD types of fight or flight feelings. Sonya explained that with cancer we don’t call it PTSD, but the emotions are similar because we have constant traumatic experiences. The trouble is, the anxiety and fight or flight emotions experienced from the trauma of scans, dealing with the fact that there is no cure to this, thinking about eventual death and dying, etc. produces cortisol in the body that is not good for healing, or fighting cancer and can lead to blood sugar problems and obesity, and other issues. I am still figuring out how to mindfully meditate and embrace surviving and living with cancer. Here is a link to some classes UTSW offers to cancer patients and families. I think I will attend some of them, especially the class on music therapy and meditation. https://utswmed.org/cancer/support-services/embrace-survivorship/
I am so grateful to Sonya and for the help she gives me as I take the next steps forward and figure out how to live with cancer. I am a survivor.
Tostadas and Mexican Brownies
Black Bean Tostadas and Fudgy Mexican Brownies!
I made black bean tostadas for lunch and Mexican brownies tonight. The tostadas I just made up because I was tired after a counseling appointment but wanted something with some crunch and black bean goodness. I did not have fresh tomatoes and the pic would have looked better with fresh, but today I just used diced tomatoes from a can and some chopped lettuce. For the tostada beans I sautéed a quarter of an onion chopped with a minced clove of garlic. Then I added a can of rinsed and drained black beans, a half teaspoon of ground cumin and a teaspoon of chili powder until heated. I used a potato masher to mash the beans with the onion and garlic. I air fried a couple of corn tortillas until crisp (about a minute and a half). You could also bake them at 400 degrees until crisp. The brownie recipe is from the current summer edition of Forks Over Knives Magazine. You use a high speed blender to blend the black beans, applesauce, chopped chocolate and vanilla, than mix with the dry ingredients. I used coconut sugar instead of cane sugar and unsweetened baking chocolate. I did not sprinkle with powdered sugar. Satisfied my chocolate craving!
Thai peanut butternut squash soup topped with chopped basil, green onion, and coconut milk
Tonight I made this soup! I have made a different version of squash soup that was good too but this one with the peanut butter was AMAZING! I sautéed with vegetable broth instead of oil. I like a kick so I was generous with the red pepper! I’ll definately make it again! Here’s my picture
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!