Wednesday, January 30, 2019

Medical Update

Thank you for being understanding and patient! I've been very private about the status of my health, but what I'm learning is that me not blogging hasn't removed the questions, the texts, the emails. So I'm thinking it might be easier to revisit the blog updates, that way if people want to know what's going on, they can read the blog, and even comment if they choose to, but hopefully I won't be asked so many direct questions all the time. I've learned that I really value the times I get to live without my cancer always getting brought up in social situations.

Since the most recent brain surgery on 3/3/17 I have been doing regular MRIs, as we track another brain tumor. Radiation and chemo have been recommended at each appointment, but I have declined so far. Now, since I do my MRIs locally in Seattle, then upload them to UCLA's brain tumor board, the only results that I receive is the radiology report from UW. I get zero feedback from UCLA. They don't call, they don't send a report, I just read the official radiology report and compare it to previous MRI reports and make my own decision on whether or not to completely panic or not (ha!).


After reading that radiology report, I wanted to vomit. My entire heart dropped to the floor. It was scary, and I immediately believed that the tumor had grown significantly. I saw, "interval enlargement" and "additional areas" and my head started spinning.

Then I saw dan walk over to a comfortable chair with his phone. I asked what he was up to, and he said he was trying to pull up previous rad reports to compare. (He's so smart!) So I logged into my UW portal that holds all of my medical reports, and we sat there while I dictated the tumor measurements from all the previous reports while Dan wrote them down.


The MRI scans are set at 3 mm slices, so any slight movement of my head 
(which is impossible to avoid) skews measurements. 
So there is no way to get exact quantifiable results with an MRI, it's more of a window.


After comparing measurements, I felt more comfortable. It's never easy living with the knowledge that there is a mass in my brain (possibly, according to the rad report, three masses), but I also feel strongly that I am going to make health decisions based on what feels good to me, not what is expected of me. So basically I'm flying by the seat of my pants. (Kidding, but not kidding.) I'm still doing some treatments, drugs, foods, lifestyle choices, but it all has to line up with my ethos. 

So there we have it folks! A solid, raw, technical health update. Now Emma and I can get back to gardening!



42 comments:

  1. I love you, love your strength, love your willingness to share and am confident that readers will give you your space and only share love. <3 <3 <3

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  2. So wonderful to hear an update from you and that you’re doing well. I admire your choice to do what feels right for you given all of your education and experience. Keep on enjoying life!

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  3. Jess in Yak with the same Drs.January 30, 2019 at 8:47 PM

    Thank you for the update! Out of curiosity, why don't you contact UCLA?

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    1. Hi Jess, I contact UCLA to get them to request the MRIs (which takes forever to get scheduled, I have to reach out multiple times, and I have to do it this way for insurance purposes), then I make my appointment at UW. While at UW doing the scan I ask for a copy of the disk. Then I go to a friend's house to upload it to the UCLA system (our computer isn't compatible). Once uploaded, they include my case for the tumor board. Or at least that's what they're supposed to do. I have tried to get those results from my neuro-onc many times but he never answers my emails, nor has his nurse. That is, since last February, when I declined the opportunity to engage in he's clinical trial for a new drug, which would require a 5th brain surgery. I have never again been able to get my emails responded to by my neuro-onc. Before I opted out of his trial, he was very prompt with all questions via email. I know he's a busy man, but this system leaves me disheartened. When I was under the care of my neurosurgeon for all these years at UCLA, she was always able to answer any and all questions. I don't know why my neuro-onc only communicates with me unless I'm doing what he wants me to do. I can't get a printout or document about the suggestions from the tumor board. The one thing that I can get is a basic statement from UCLA's nurse navigator. She is wonderful! But why won't my oncologist respond to basic questions? I only have a question every 3-6 months, I'm definitely not hounding him. He was my best friend when he was wanting me to do his drug/surgical trial.

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    2. Jess, I have followed your story and wish you all the very best. This chap seems to be in it for the money, and a hard nosed bastard as far as I can read from your words. When I first watched My Last Days I cried for you both. Glad to know life is still full of happiness and love. May it continue even if that old fart in the hospital is a money grubbing dictator. All love😍

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    3. Hi Jess!
      I just eant to wish you all the best. Short story my now 41 yr old daughter was born with servere hydrocephilis.She was my first. All grim news in the beginning. However Dr Marshall Grode from Cedars Sinai in LA was her nureosergon.He saved her and to this d as y they still keep in touch. Please take his name down.He still practices. And his team is one of the best. I promise you that. Just in case you would like a top notch one of the best in the country. Just Give info.and my daughter name. His medical asst for all this yrs is Dori. They know my daughter well. How can I ever forget the man that saved my daughters life and still she keeps in touch.t She moved far away thats the only reason she would go see him on an emergency basis. Othetwise she has her Cat scans regularly where she lives now.She is married now,so does not have same last name but if you can see my last name just give them that.Otherwise Dori will know her by first name.You can also put in a friend request ffg or me and I will give you more info if you want it. Dr Marshall Grode 310-423-6789 Right by Cedars Sinai Hosptial.Number 1 Neuro Surgeon! Anyone on his team I would trust with any of my family members lives. Best wishes to you always.
      Linda M.

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  4. Dan is SO smart! Love to you both, you crazy kids.

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  5. Thank you so much for the update, Jessica. I’ve followed your story ever since I saw you on My Last Days. I pray that you can beat this horrible disease and have many more wonderful, happy years with your sweetheart, Dan. I’m a cancer survivor so I know all too well the fear of the unknown when it comes to scans and test results. Keep your positive attitude and unbelievable strength. I’m sending you love and prayers for peace, health and healing.

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  6. I recently saw your story on YouTube and was blown away... Your strength, resilience, caring, and happy personality despite what you and Danny are going through is inspiring... I pray for nothing but a wonderful outcome for you and Danny, and look forward to following your progress!!

    Sincerely,
    Kevin
    NYC

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  7. As long as I do what my doctor wants me to do he stays in touch. If I deviate or say no, suddenly I am persona non grata and nobody will talk to me. And, God forbid, I try herbs or other non AMA approved entity. Keep doing what you feel is good for YOU and not what anybody else wants. You are an inspiration to us all.

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  8. I recently found your episode of My Last Days on YouTube. Man, I was blown away. I come here to see about an update on how you are doing. I lost my dad to terminal lung cancer in 2017. So, I am always happy to see someone out live expectations when cancer doesn’t win. Best of wishes and wellness to you and Dan.

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    1. Hey yellowdaffodil.. I just lost my mother to terminal lung cancer and have been looking for others that I could speak with to relate to. What kind of lung cancer did your dad have & how have you been coping?

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  9. Your love story is like nothing I've seen or heard before. You inspire me to enjoy who and what I have in life.I am so grateful for running into your Youtube vidio. My heart and soul will never be the same.

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  10. I never write comments on blogs. Never. But after watching your story on YouTube it was as though I was watching myself and my husband and everyone talk about us, minus the cancer. You said in your vows that not everybody gets "this". That is exactly what I tell my husband. I'm sad to know that not everyone in life gets the love I get. The true, unconditional, "I can do no wrong in this man's eyes" feeling, the "this is what it is to fly" feeling, pure joy and I never want to leave your side feeling. The "secret language" only you two know about. The kind of love that makes you watch as they drive away to work and it literally hurt your heart until you're with them again. The counting down the hours until you're in each other's arms again. The spending every second together because you want to and not because you have to feeling. The "I choose you over and over again" feeling. I felt a connection with you because not only do I see a lot of the quirkiness in you that I see in myself, but because it's something so few of us truly get to experience that makes so few of us truly understand what it feels like and how truly blessed we are. I saw past the cancer watching you two and saw that the love and life you share together would be just the same, minus a few Dr appts, if you didn't have cancer. All of this combined is how you know you have found your soulmate and it's a beautiful feeling, isn't it? I truly wish the both of you the best of luck and know you'll live a long and beautiful life together 😊

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  11. I'm so happy to see you updated your blog ---- did you ever get the DCVAX treatment?
    Close friend going to make a decision soon

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  13. Depending on the chemo, chemo really isn't as bad as television shows would make you think it is. I had eight months of chemo and while it wasn't fun, it was definitely doable.
    As for radiation... if they are doing targeted radiation, that is, only radiating the tumor(s) themselves, I'd say go for it. But if they are talking about whole brain radiation, I'd wait until there were no other options, because recovering from that is rough, and I think you can only ever do it once, anyway.
    Consider the medical intervention, though. You've got the drive and the spirit to overcome this, but cancer doesn't care about things like that. If it starts to grow, do the chemo. You could literally be buying yourself years, and like I said, it's honestly not that bad. If I could do it--and I did--you definitely can.

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    1. I agree love. But quality of life means everything. As much as you want to LIVE, those around you want you to as well. I hope you are getting better by the day. Praying for God to lay his loving hands on you and heal you completely. Good, very encouraging info. You can try chemo. If you can’t do it, then stop. But try! Love ❤️-to you and that precious man by your side. You BOTH are beautiful and an inspiration to many!

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  14. Thank you for considering to revisit the blogs again . Take plenty of time away from us to enjoy life without cancer coming to the forefront . You don't owe us a thing!

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  15. Just came across your and Dan’s story on YouTube. It is so heartwarming to see two beautiful people taking on this life together. Your story has touched me deeply and I just wanted to send a message of thanks. Thank you for sharing your life story. I hope this message finds you both well. -Sue

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  16. Hello Jess♡ I haven't ever written on a blog. But when I watched your story I was so deeply moved. Thank you for sharing your life with the world. You are such a strong and very special person. Dan is absolutely the best man in the world. Your family is lovely. Your personality and smile extend love and happiness to the everyone. I strive to be like you. A true hero. Thank you so very much for being you and sharing yourself with us. A strong, soft-spoken amazing conqueror!

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  17. Here comes a hug from a complete stranger in Sweden. Thank you for sharing your story! xx

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  18. My goddaughter has NF2 which is a children's tumor disease which clusters tumors on nerves and in the brain areas where she was concerned. She has had fabulous neuro doctor at Mayo in Jacksonville Fl and when she was living in Nashville Tn at Vanderbilt she had amazing neuro doctors. Her group of doctors would be on conference calls discussing her case because of the complexity of the surgery and her treatment. She has needed 3 surgeries to relieve the large tumors growing which were currently benign. The issue with NF tumors they sometime come back malignant. None of her doctors has ever neglected her or not returned calls and has been proactive in returning emails. If you would ever like the names of her doctors in both location I am glad to pass it along. All the best and feel good! Deborah

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    1. I went to the Mayo Clinic to have my bladder and vertebral cancers treated. They are the absolute best!

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  19. I just finished watching your video about your surprise wedding and I'm still crying. The love you both have for each other is so beautiful,so inspiring and so real. I will keep you both in my prayers
    Thank you for sharing your life with us.

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  20. May God bless you both and give you a very long and happy life XX Bless you both XOXOXO

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  21. Iam happy things are going as yoh expected, your such a beutifull soul and strong will power, wish you all the best in your life, and live life to the fullest, cherish everyday, family friends :),

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  22. Hi Jessica! I’m not sure if you’ll read this but I thought I would post anyways. You seem to get lots of recommendations from people and I’m sorry if this is unwanted info! I recently learned a lot about more natural treatments by a lady who does a lot of holistic living. She had breast cancer and went about it the more natural route. She saw a Dr Hilu in Spain that has some incredible treatment methods. It’s not cheap but I believe you can send him bloodwork and then go from there, before making any kind of trip. Andrea.Thompson (Instagram) is the lady’s health coach that I was speaking about. Andrea also best cancer naturally. Anyway, I truly wish you the best. You are giving everything, doing incredible things to help yourself, and you are doing amazingly at it!

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  23. Dear Jessica
    I hope your are continuing to do well.
    Love from Marysville Washington!!

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  24. We just love you all the way from Down under Australia ! I KNOW you’re going to be ok, you ARE ok! You’re truly an inspiration to many! Keep smiling & enjoy making more memories of that true life love story of yours!
    Sending love !
    Tam xx

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  25. Hi Jess.
    You touched my life in the most beautiful way and Dan is so godsend.
    Have you heard of apricot seeds as they are so powerful even for healing cancer? Look it up.

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  26. Hi Jess, you are such an inspiration human. Lots of love and prayers from Sydney Australia ❤❤❤

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  27. Please post an update or another place we can get updates???

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  28. Hi Jessica: You do what you feel is right for you. Because you haven't done chemo or radiation is the reason you are still here. Remember always, God is the doctor of all doctors! You are beautiful~~

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  29. Dear Child...you are blessed...you and your husband! Love your story! Love your fight girl!
    Maybe this is why we’re all touched by cancer...so we can bond in miraculous ways...we have strayed from human loving-kindness so very much...I find cancer to be the antithesis of people sharing and coming together...we need to be shook more often! Because we take this precious gift for granted so very often!

    May God only enrich you and your families all the more! Courage is the strength to trust when we are faced with “how” and “why”...you have entertained angels dear! Your husband is your foundation! What a blessed pair of souls you both are!

    I thank you for your strength...and may God, through others bless you both! Abundantly!

    To anyone reading this...ALWAYS CHOOSE LOVE! It has no limitations...

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  30. I pray for you and your lovely husband and It is very sad to say but I am so glad you guys dont have kids to worry about with all of this, that would just be wayyy more heartbreaking. You are way stronger than I am. I cried through your whole show and can't understand how you are so happy through this whole trauma... You are very tough and beautiful inside and out and so is your loving husband. I KNOW you will beat this cancer! Stay strong girl ;)

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  31. Dear Jessica,
    I wish I did not see your youtube. It's so painful to see such a beautiful girl and person going through this. I am a cancer survivor also and it's important to know that good things can happen for you. Also, take the treatment. Also consider watching youtubes of people who have taken cannabis oil. There us no harm in trying it. I did and it helped.

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  32. Jessica,

    You and Dan have taught this old man so much about unconditional love. No matter what happens, I'll carry your story in my heart forever. Thank both of you for being so real and for showing me how to live my very best life. God bless!

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  33. Very Informative content on Brian cancer Thank you for the article!

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