Saturday, April 28, 2018

2018 Update

Hi blog readers,


I took a necessary hiatus, and truthfully I’m not sure how much blogging I will continue to do in the future. I’ll have to feel it out.


I have been focusing on my brain surgery recovery. I still have various therapies several times a week, and I'm trying to enjoy my life as much as possible. I have several new deficits that I'm trying to correct, but it's a lot of work, and headway has definitely slowed.

I became very overwhelmed with this last brain surgery. In fact, there were some unexpected and damaging events that are taking me a long time to process. When I get severely overwhelmed, my whole body starts shutting down. Since I’ve been living with these brain tumors, and experiencing surgery after surgery, the stress created an autoimmune disease called Hashimoto’s Thyroiditis. From the advice of my various doctors, and specialists, I chose to stop the blog, and stop social media including emails and texts. 

Over the past several months I also had my DNA sequenced, and the most interesting finding is that I have two mutations on the same gene (one from my mom and one from my dad). These mutations are on the genes that detox stress hormones (like cortisol). Instead of being able to hear stressful things, witness stressful things, or experience stressful things, and process it out of my system, my body just keeps recirculating all the damaging hormones for weeks, or even longer. Because of these two mutations, I can feel the stress hormones in my body. I have anxiety attacks frequently, I get stress rashes, hives, and rarely sleep through the night. The circulating stress hormones do a number on my quality of life. But the most damaging aspect is that it causes the release of inflammatory cytokines that feed cancer. So anything that is negative, or hurtful, or overtly aggressive, or even perceived negativity, triggers a cycle of debilitating anxiety, and tumor growth. Stress literally kills me, it's written in my DNA.

I’m trying to mitigate my stress response, and release stressful things in my life, but I have a lot of internal fear and anxiety already. I have regular nightmares about my surgeries, and I still have a lot of physical and emotional pain. Because of all that, I have had to completely change my life.

I really appreciate those of you who have been patient and loving toward me at this time. And to those of you who voiced frustration, you are exactly why I had to protect myself from unkind, hurtful statements. 

I started this blog to keep my friends and family abreast of health developments. I could never have imagined it would bloom into a massive web presence. But at the core of this blog is just me. I’m just a woman trying to navigate her life as she lives with MRI after MRI, brain surgery, after brain surgery, after brain surgery, after brain surgery. And as if the demands of normal daily life weren’t enough, I have to find a way to remain positive in a nearly impossible situation.

I have been very fortunate to have so many kind, thoughtful, and special people that I have met along this journey. I hope to continue to blog, but I have to put my health first, even when it upsets people. I wish I wasn’t so sensitive, but so far, I can't seem to be able to adjust that aspect of my personality. I hope you can understand, and that no one takes my choices personally. 

66 comments:

  1. Just happy to hear from You! Do what you need to do for Yourself and know that you are Loved!!! Love, "So Cal" Patti

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  2. Dearest Jess,

    We are wrapping you in a hug. You are number #1. Your health, your family and your life is paramount. No need to explain to us. EVER. We love you unconditionally, always. Thank you for the post. We are here for you always and we think of you daily. Sending strength and massive amounts of love.

    Love, John and Steph

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  3. Girl, you are a WARRIOR. Through you, I have learned to prioritize ME in my own life, something you are so beautifully demonstrating. Always do what you know is right for you and your web of loves will understand, applaud and support you. <3

    CJ

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  4. Jessie girl, your auntie and uncle send more prayers and the highest spirits to heal and make you healthier , happier w/out stress..and financial worries. You are surrounded.

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  5. Always love to hear from you! Big hugs and I’m so happy that medically we can learn these things that affect us. Keep doing whatever you need to do for you and I wish you all the best healing!

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  6. Love YOU Beautiful and I’m so grateful to hear about your journey but completely understand your need to disconnect. Just want you to HEAL & be HAPPY ! Successfully finished my 2nd craniotomy 4/10/18, awake this time!

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  7. Jessica, Let your intuition expand and guide you through the mazes. You are doing the best you can. You will be guided to interact with people who increase your energy and joy.
    Your friend,
    Toni

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  8. I love you. And Dan too. And want for both of you peace of mind and heart.
    Jozie

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  9. I am so happy to hear from you. You are so beautiful, so strong, and such a courageous warrior! Take care of yourself. Enjoy your family. Nothing else matters. Surround yourself with animal companions. They always seem to relax me.

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  10. Hi Jessica,
    I think you are a very strong person to have gone through the amount of brain surgeries that you have and have continued to fight and thrive. I had my one craniotomy one 2.5 years ago and it took me 2 years just to process it and being able to believe that *actually happened*. You're an inspiration with how you've approached and handled your surgeries. Sending all the love and positive thoughts your way girl.

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  11. Wishing you all the best as you do what is right for you. You’ve given so much on the blog! It’s a time to reintegrate and heal, to give to yourself as generously as you’ve given to others.

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  12. Always keeping you in my thoughts and prayers.

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  13. Hey Coconuts! Thank you so much for the update, especially as you shared just how vulnerable you are when you express yourself in such a thoughtful and courageous manner. No matter if I hear from you or not, you are always in my daily prayers and positive intentions. I'm very proud of you for maintaining control of your own healing, it is as it should be. Be well, my lovely, brilliant, beautiful, strong girl. All my love,

    Criquette

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  14. Jessica, always wishing you the best. You are never far from my thoughts and very relieved to hear you are doing what YOU need to do. Take care and so much love to you.

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  15. Be Well Jess!! Thinking of you and cheering you on from India!!

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  16. It’s weird... quietly following your blog and almost feeling selfish for wanting to know how you, a stranger, are doing. So I will leave my first comment and thank you for opening your life up to strangers and allowing us to learn from your strength. This should not be added stress for you and I’m sure all your readers agree

    - jessica

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  17. I have been reading your blog for a long time. You should do what is good for YOU and not worry about anyone else. I can't even imagine anyone blaming you for that!

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  18. Jess
    I am glad you are prioritizing yourself and what you most need and want to do with your precious life and your time. It is an important lesson to be true to ourselves, not live our life to please others. We all have to weed through the obligations and commitments in our lives and update ourselves, release what no longer suits us or nourishes us, live more simple and free, make choices that align with the best road forward. We certainly don’t want you to live your life as a blog slave. So many people live counterfeit lives, betraying themselves, feeling stuck doing what they don’t want to do. None of us want to sell out to guilt, pressure, criticism, demands. Better you stay focused on what brings you joy, peace, fulfillment.

    You are a wonderful writer and a beautiful soul and through so many years you have generously shared your intelligence, spread kindness, hope, truthfulness, courage, wisdom and love. You are a fellow traveller on this earth plane journey and you have already done much more than your share of teaching, inspiring and supporting others.

    When the chaos of the world effects you, or the static of other people’s energy or expectations of you cause distress, I hope you can anchor into that place in your soul, in your heart, of perfect peace. We all have that chamber where we can rest in the stillness and peace of that spark of the Divine which is within all of us.

    What’s most important is that you do what is best for you on your journey. Be true to yourself, be good to yourself and know that you are, and will always be, loved by so many others who are immensely grateful for the presence you have had in their lives. Wishing you blessings of springtime beauty and uplifting energy. Love, C.

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  19. You really are amazing...

    I discovered your blog a few years ago when I was having my own health problems. I continue to check in on you to see how you are doing, and more selfishly, to be inspired by your strength and uplifting posts. Thank you for sharing your thoughts and experiences - it has been extremely generous of you. Thank you for all you have given. Truly.

    I wish you the best during your recovery. You deserve it. So much.

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  20. You have helped so many and you continue to inspire me.

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  21. You are so inspiring, and I will send you all my healing thoughts, vibes and prayers that you are on the road to recovery. I have never met you and already respect you and your journey. I too am a cancer survivor, and you have been through so much already. Sending you endless amounts of love and strength. Marcia Donziger

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  22. Wow! Jess, I've just watched your wedding episode on my Facebook feed here in New Zealand and I can honestly say I've never seen so much selfless love in one place. I'm so grateful to you for sharing your story. To find you here still blogging when you can is another amazing gift. Jess, you do whatever it takes for you to laugh, love and live your amazing life with your family. I will look for any updates or posts but if you never post another thing because you are using all your energy to live then great! I wish you many many years of living, loving and being loved. Thank you for sharing your journey and thank you for reminding me to love and live life no matter what. From the bottom of my heart (And the world) I wish you all the love and light I have. Xoxo Susan

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    1. I could not have said it better myself. Beautifully articulated. Amen, Susan!

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  23. You are an inspirational lady Jess. I’ve just watched your wedding - so beautiful.x Sending you love, hugs and strength from the UK.

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  24. Jess - I recently learned of your story online. You and your husband are such an amazing couple. Just by living your life authentically you are an encouragement to so many. Big Hugs, Cyndie

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  25. Just sending a lot of love in your direction. I can't believe some people think they are entitled to your time/energy on this blog. This is for you, and if you feel overwhelmed its perfectly understandable to stop posting here.

    ❤️

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  26. Jess, I just watched your incredibly moving documentary which I feel will stay with me forever. I was moved beyond measure and felt compelled to visit your blog simply to tell you what an inspiration you are, not just because of your health challenges, but because apart from your grace and courage in facing them, you are clearly such a special person and a shining light with the most loving and kind heart. Your story reminded me to be more present and more grateful. I struggle with chronic migraines and a genetic disorder similar to yours, and sometimes I feel very discouraged and feel depressed. Your optimism and zest for life and your capacity for unconditional love against all odds inspires me to check myself when I start feeling sorry for myself. I am so happy to see that you found a partner who is so deserving of all that you have to offer. I send you wishes for peace and continued healing, you beautiful soul. You will be on my mind for a very long time.

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  27. I just saw Justin's video about you online and I cried and laughed more than I've had this whole year. You're so funny it's contagious and your kind and radiant spirit just shines through.
    I wish you many more years of laughing until it hurts. Also, where can I get myself a Dan? Do they sell them on Amazon? ALSO, you do you, girl ♥

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  28. I just watched your episode on SoulPancake and just wanted to wish you well. You and Dan are such beautiful souls, and I hope to god that the universe sends you nothing but good news and good days. Love to you both.

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  29. I stumbled upon your SoulPanacake episode by pure chance and was completely captivated by your story. I've just spent the last hour madly chasing you down, I knew you'd be ok, but I needed to thank you. I wish you all the love and light and illumination I can manifest, for you to continue to find your way, together. You've touched me in such a profound way this evening, I thank you xxx from Dwellingup, Western Australia

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  30. Hello from another island, Trinidad (and Tobago)! I just watch the beautiful documentary that featured you and your husband and I just wanted to send my best wishes to you both as you navigate this overwhelming burden. Yuo're both strong enough, no matter what is written in your DNA to fight this. Remember that the rest of your DNA is fighting for your life too :)

    I'm sure youre regularly flooded with suggestions and that you may never read this comment but I have to add my input in hopes that maybe you will see this and that you will maybe at least consider it. And if you don't I know that thats okay too. First is Dr. Stanislaw Burzynski... If you have not already found this incredible man I hope your paths will cross one day! His specialty is brain cancers, especially rare and hard to treat toom-ahs! My next suggestion is a little more wild... Literally! As a family we believe in plant medicine... CBD oil has saved and sustained my sister's life (melanoma, stage 4, very aggressive... alive and kicking ass far longer and better than she should be!) but CBD is not what I want to suggest... Have you heard of or done any research into Ayahuasca? The whole time I listened to your parents talk about what eating at your house was like I thought "this girl knows where her cure lies!" and I had to seek you out in hopes that Ayahuasca could help you. No more words necessary from me, just leaving this in hope, as I said before, that you may see this and that it may register with you and that it could be the additional miracle you deserve!

    It was such a honor to witness your story and I thank you for sharing it with us. Praying for you and believing in your cure!

    Carla

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  31. Wow you are such an amazing person for your continous strength and keeping postive to protect those around you. I wish you well in with your recovery. Looking forward to your inspirational words in the months and years ahead. Take care of yourself

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  32. Your story definitely brought tears to my eyes but as I watch you and your husband grow in love I see you both living a wonderful life and a long happy life through God’s Grace. I pray for no suffering. You are one brave woman. The video of your wedding actually gave me strength as a person as I get weak at times and then I see you with brain cancer and you’re so strong it makes me feel so selfish sometimes because there are so many other people in the world that are doing far worse than me. I pray you live a long happy life with your husband because you deserve it and so does your husband. When I was sick my husband bathed and washed my hair And that’s when I just fell in love with him because of the love he showed me that nobody else had ever showed me before. Trusting God to work A miracle in your life. I believe God has plans and a purpose for you, you have made it quite a long time with this diagnosis. I pray for your not to suffer and not to be in any painas you’re so very strong . I only wish I was half as strong as you are. Love in Christ, Susan from Florida

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  33. <3 Thinking of you and your family! <3

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  34. I, like many others, found your story on SouPancake. Your story of love and overcoming is one of the most powerful stories I’ve ever heard. I had me smiling big and crying all at the same time. Thank you so much for sharing your story. I will treasure that forever. I’m so glad you’ve found a home in Edmonds. I’m happy to call yeah place home too. Much love, Nate.

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  35. Love, prayers, love, more prayers, and even more love to you and Dan. What you have shared has made an indelible mark on my heart. I will pray without ceasing as I KNOW IT WORKS. Through my tears I am smiling as your love is contagious and as beautiful as your spirit. Love












    .

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  36. Hi Jess! You should look into the AIP diet for treating hashimotos! It’s the only thing that has helped me with inflammation and joint pain

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  37. Hi Jess, I just watched your My Last Days video on YouTube and it affected me deeply. From that and from reading your blog, I've realized how kind, compassionate, loving, and beautiful you are. I understand what it is like to live with anxiety and how debilitating it can become, and I hope the decision to not post frequently on this blog helps you. I'm sending you so much love and keeping you in my thoughts. <3

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  38. You're wise to surround yourself, bathe yourself in what is beautiful and nourishing and healing. I'm going to adopt this for myself and apply it to chronic stuff I love with. On an episode of Elementary (modern day Sherlock Holmes) Sherlock says something about "Sanctum Sanctorum" which means the holy of holies. He's speaking of his home, but I started thinking of my body as my sanctum Sanctorum. This is where my Spirit finds it's home, and so it really is sacred space. I see your boundaries as set not only to keep negative out but also to make room for what is light and love and nature and beauty to dwell within you. Well done you! I send you loving energy as you heal from your most recent surgery - May each day bring you and Dan sweetness. 🌞 love, jemma

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  39. Thank you so much for your willingness to share your story. I just finished the 34 min clip on Soulpancake’s Facebook page from the docuseries my last days. You’re laugh and spirit are amazing. I don’t isually watch things like this but there is just something about you and Dan. In watching this glimpse into your life it helped me to remember that it doesn’t need to take a tumor to remind me to find joy in everything I do. Even the hard stuff. Please know that you have helped me and I’m sure many others. I love words but I can’t seem to find a string of them appropriate enough to express how much your story has touched me. May you continue to have the strength to move forward.

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  40. You are a beautiful human being. Thanks for your willingness to share.
    Focus on your own need for peace and tranquility and healing for now. Friends that
    you've never met are praying for you.

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  41. Take care of yourself and do not worry what others think. You are amazing and have been through so much.... best wished to you from Connecticut

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  42. I just watched your documentary on SoulPancake. You and your husband are absolutely beautiful and true soul mates. You are so strong and definitely a fighter. I wish you both good health and happiness always.

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  43. Know this - you are surrounded by Love, for you truly are an inspiration to more than you can imagine. Please take the time you need to nurture your body and spirit. ❤

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  44. Omg Jess. Please forgive me if I’m addressing you like I’ve known you forever, but I just ugly cried my way through your Soul Pancake video and I couldn’t be more humbled by your story. What you’ve had to go through, the love you and Dan share, the look on your father’s face as he said he selfishly wants to hold on to you forever... it all hit me down to my core. I can’t imagine the strength it takes to fight for your life the way that you have. You are so blessed to have the love and support you have, but most importantly, you are so blessed to be the fighter and determined person that you are. I have worked in the medical field for 15 years and have worked with my share of terminally ill patients, I have encountered only one ☝️ person that had your grit and live for life. It’s rare and something I completely marvel at. God bless you Jess. God bless your marriage and your sweet parents l. I wish you another 60 years of life!!

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  45. I hope you both know that there are so many people even us that you have never met that love you and pray for you. I'm so sorry you both have to go through this, it hurts my heart to see such beautiful people having to go through such ugliness. But you do it with such grace.. I will think of you both now every day and remember to be grateful for what I have, I thought my life was hard but it is nothing compared to your struggles, and for this i thank you. Take care of yourselves and keep enjoying every moment. You are and will always be a inspiration. Much love❤

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  46. I have been following your journey and think you are one of the strongest kind humans God has put on this earth. No answers why you are being put through this hell.I pray the doctors find some way to let you live pain free and happy. You are loved more than you will ever know. Xoxo

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  47. I love you, Jess. May the love of your heart surround you, sustain you, and bring you peace always. You're inspiring so many and so many are praying for you! Remember you're loved and filled with love. Maureen

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  48. Jess and Dan,

    There is nothing that can suffice for how beautiful your love and your souls bring to this world. You have both put life in perspective to cherish the “little” moments in life which actually turn out to be the most precious ones. You are both loved by everyone who hears your story and I know I will pass it on to people in my life. I sincerely love you both. Keep smiling and snuggling and laughing as much as you can. Thank you for sharing part of your journey with us.

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  49. I do miss your updates but completely understand.

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  50. I found your blog while awaiting the results of my own MRI, feeding the fear of what might be. You have inspired me, sharing your story and knowledge, your wisdom and generosity, the positivity of your nature and human response to stress. I will pray for you and your family and hope that we can find a way to beat this. Thank you for sharing your most vulnerable thoughts and life with us.

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  51. Prayers are with her I hope she is doing well today.

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  52. Jessica's today Instagram is a bomb! ;)

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  53. praying you touch the Beyond today, Jessica. who is there and within and all around you. and all of us. love. light. life. to you and yours. always.

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  54. Sending love, light, compassion and healing energy to you Jessica. I am so sorry for your suffering. Thank you for your positivity and your light; you are so beautiful. Your video helped me today!

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  55. Hi Jessica,
    I too had brain surgery. My surgery was on May 17, 2018, I'm 53yrs old with three children, going through a divorce and with a grandchild. I want you to know that YOU ARE AWESOME my sister. I am committed to adding you to my prayer list because our Lord says that "where two or more are in agreement and gathered in his name (with our request) that he is in the midst" if it is his will. I am honored to come across this post and you are excellent and OUTSTANDING to detox and distress your life. I'm learning to do the same thing.

    Well, I won't continue to ramble on and on as I have a tendency to do that when I'm passionate about something. (smile). You ARE light, God loves you, YOU ARE BEAUTIFUL!!! Big hugs to you!!!! (smile)

    Your sister in brain surgery recovery,
    Ingrid (Atlanta, GA)

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    1. It is always God's will for anyone to get healed. Please know that. ❤

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  56. Thank you for sharing your life that makes such a difference for our world. Thank you for letting us be a part of your life, your marriage, for letting us learn to live, love and be strong and choosing happiness no matter what.
    God bless your life, your love and marriage. Karla

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  57. I love your positive attitude and respect your need to stay away from stress. I am thankful you have such a wonderful husband and support system to help you through this journey. I fought cancer last year and my husband stood by my side and literally kept me alive by feeding me through my feeding tube while I slept, and doctoring my burns from the radiation. Thank you for reminding me how lucky I am to have my loving partner! God Bless you and make you healthy. You are in my prayers.

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  58. I just watched your and Dan's story and cried most of the way thru it. Just had to find out if you were still doing well. I will keep you in my prayers. You are very brave and courageous. Much love and prayers

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  59. Jess, are you a Christian? Have you accepted Christ into your heart as your Lord and Savior? If not, I would greatly suggest you do. On YouTube, I suggest watching Kenneth Copeland or Andrew Womack. Healing, COMPLETE healing is yours. I'm praying for you!

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  60. I'm so sorry to hear about your reaction to stress levels. Since you are in Washington, do you have access to medical marijuana? I self medicate with CBD but the blend of THC and CBD is optimal. Good luck with your recovery. Rooting for you in Illinois <3

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