************************ UPDATE *************************
1/6/17: I am overwhelmed, I am not well (dealing with my own recurrence), I am not able to respond, and I can no longer support the volume and intensity of patient e-mails. Thank you for your understanding.
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Before you reach out to me with questions, please search the blog for your own answers.
If you have a specific question that you couldn't answer from the search feature, please comment below on the blog, and I'll get back to you.
Dottonello765@gmail.com
ReplyDeleteJess, I have no tumor, but extensive experience in the life of cancer. I am also a budding neuroscientist and my dream was to be a neurologist. If you need a friend or someone to reach out to, I check this email regularly.
Rooting for you and yours.
--Dominique
Dominique, Thank you! I would love to keep in touch. I'm glad you reached out. I do love neuroscientists - and people in general. :)
DeleteBourg Camille : camillejulietteb@gmail.com
DeleteHello Jessica,
My name is Camille, i'm French and i'm 20 years old.
I underwent surgery complete with stage glioblastoma 4. Today I make Stupp protocol. However I would like to have contacts with medical centers in Germany offering such vaccine treatments for glioblastoma. I thank you in advance. Camille.
Camille, I just emailed you some information. I hope it helps! And good luck, I'll keep you in my thoughts and prayers.
DeleteHello ,
ReplyDeleteI sent a comment yesterday and don't see it here..
My brother was diagnosed with Anaplastic Astrocytoma
He just received his first dendritic cell
Vaccine the past Wednesday with Dr Chang.
My other brother, Simon, met you outside Dr Chang
Office and briefly chatted with you.
Would it be possible please to have Avner speak with you?
He is eager to meet people who received
A similar treatment and to be inspired.
The hardest part for him, and us, his family, is the emotional
Distress he is experiencing.
Please respnd to me either via email or phone if it's ok with you .
aabeckaser01@gmail.com
718-501-4107
Many thanks
Gd bless
Anat
Anat, Of course I'll talk to your brother! I'll email immediately.
DeleteHey! I am surprised I have not run past your blog before! Are you on Twitter? The brain tumor community is connecting through the hashtag #btsm. We'd love to see a survivor such as yourself join us for our monthly tweet chat: 1st Sundays of every month at 6pm PT/9pm ET. I am @TheLizArmy. Keep up the good work!
ReplyDeleteHi Liz, I'm familiar with your blog. You're brilliant, thank you for sharing your story so liberally! I don't have a Twitter account, but I'm happy to share the info about your monthly tweet chat on my resources page, and get the word out to my friends! So nice to hear from you. :)
DeleteHi Jess - my husband was just diagnosed with a grade III astrocytoma. His neurosurgeon was able to remove about 90% of the tumor and my husband starts radiation next week. Our oncologist will determine whether chemo is necessary based on the response to radiation. About halfway through his radiation, my husband will have an MRI to measure the effect of the radiation. I understand that surgery followed by radiation is standard procedure but at what point should we have a second opinion? When we get the results of the MRI halfway through radiation or when our oncologist makes a determination whether chemo is needed later this summer?
Deletethanks so much!
Hi Anonymous, I'm so sorry to hear about your husband! It's wonderful that the NS was able to remove 90%, that's fantastic. I've never heard of an oncologist basing chemotherapy on the response to radiation. If anything, I thought they based it on pathology, or follow the STUPP protocol. Interesting. Do you mind sharing the center you're going through? It's a different style of approach, but that doesn't mean it's wrong. If you were to get another opinion, I don't see why you would wait. Other than the interference with treatment, perhaps. Of course, you could always mail off your husband's records and do conference calls to see what the second opinions hold. Most NOs pair rad/chemo together because they're stronger together rather than apart, so I'm a little bit confused by your doctor's protocol.
DeleteThanks, Jess. I probably misspoke - I think ultimately, our oncologist is waiting for the results of genetic testing of the tumor to determine the next steps. We're being treated at the Austin Brain Tumor Center and our oncologist was a long-term neuro-oncologist at MD Anderson. He indicated that he usually combines radiation and chemo with grade IV's and more aggressive grade III's.
ReplyDeleteOh that's okay, I misspeak all the time! :) Have you received the results yet? I'm pleased you're being treated at a specific brain tumor center - that's fantastic! I'm sure they know exactly what they're doing.
DeleteHello Jessica,
ReplyDeleteSorry to hear about the latest MRI results, hopefully it is just scar tissue. I've been following your blog for awhile now, since a few months after my wife got her diagnosis (aa3). It has been very informative and helpful, to see another person in a similar situation adjust to a new life and share their experiences and wisdom so honestly. My wife just had her second craniotomy for recurrence last week and we just received the pathology results today. If you would like to chat my email is rayw8988@gmail.com. I know you're very busy corresponding with others so I understand if I don't hear from you. We're in Nanaimo B.C. and I have been in contact with Stephen Western for a year or so, we were going to meet up one day but it didn't work out. He's been very helpful. All the best,
Ray
Hi Ray, It's nice to meet you! I just shot off an email, sorry for the delay. I'm looking forward to learning from you guys and getting to know you.
DeleteHi Jessica, thank you for your website. My husband dx with grade 2 astrocytoma, it is gliomatosis cerebri type, wild type, but good news is MGMT methylated. He is currently taking TMZ only and his next scan is tomorrow. I am wanting to do DCVax but he doesn't qualify for current trials. May I get your German Dr info, please.Thank you!!!!! Angela email is: rhlgator@gmail
ReplyDeleteAngela, I am so sorry to hear about your husband! I just sent a quick email. Please check out the wonderful patient/caregiver/researcher run website: http://btcocktails.blogspot.com/. It's a fabulous resource, and a great way to interact and learn from others.
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteEmmett, I deleted your comment, I don't find any interest in a "competition" specifically when it comes to cancer patients. I will not be contacting you. If this is a misunderstanding, you can explain by commenting on this thread.
DeleteHi, My son has a diffuse grade 111 anaplastic astrocytoma called gliomatosis cerebri.
ReplyDeleteCould you inform me of the clinic in germany doing your DC vaccinations. We have been researching this option. thanks!
Hi Julie, I just sent you a private email from your website. Hope that works, and I'll be thinking of you and your son.
DeleteHi Jessica! I noticed your blog and I greatly appreciate the stories you are willing to share with others. You're doing amazing work! My name is Abby, and I’m currently a student at Calvin College in Grand Rapids, MI working on a project called CancerEd. My team and I are developing curriculum materials to teach children about cancer in an interactive but scientifically accurate way. We are looking to send out a survey to parents who have had cancer to better understand how they communicate with their children about cancer and we would love your help with this! If you could email me at ans29@students.calvin.edu, I would love to give you more information about the survey and about our project. Hope to hear from you soon! Thanks!
ReplyDeleteAbby, what a cool project! I would love to help. I'll shoot out an email to you right now.
ReplyDeleteHi Jessica,
ReplyDeleteCan you please contact me at bob@cancerdocs.org ?
I'd love to have an intro with you, explore ways we can collaborate helping patients & supporters.
Thanks in advance
Bob, You have been emailed. I'm intrigued.
ReplyDeleteHi Jessica, I'm new to your blog, but I sure do appreciate your posts. I have stage iv colon cancer. Your disease started from the top and mine from the bottom, (ha!) but I can empathize with your experiences. I am currently in the process of consulting with Dr. Chang in New York and was wondering if you could give me some insight into the clinic. Did you feel it was worth the $900 an hour? Not looking for medical advice, just a general "vibe" about the clinic and interactions. Thank you. Best of luck with the next phase of your "plan." milana2983@hotmail.co
ReplyDeleteHi AJ, I just wrote you a private email, but yes, I think Dr Chang is a valuable resource. I submit his office visits to my insurance (as out-of-network) and they cover a portion of them (thankfully). It's best to come with a plan where you're as informed as possible about various treatments you're interested in trying, but that's true with any doctor. Get your money's worth by being prepared. Come with copies of the research you're interested in mirroring, come with dosing ideas, and concerns. By the way, you're hilarious! From the bottom to the top, we can help each other navigate. Anything I can do for you, I will.
DeleteHi Jessica! I was also a San Juan island girl. I want to donate $100 a month to your medical bills. I know it may be a drop in the bucket, but your blog inspires mr. My mother passed from cancer several years ago, and I deeply wish she had access to some of the therapies that I hope you have access to. Much love xo
ReplyDeleteLeah, You are amazing! What a generous offer! I am incredibly touched. I'll email you right now.
DeleteOops! Me not mr! Sheesh autocorrect! Feel free to email me at leahtaylorbiology@gmail.com. Much love to you.
ReplyDeleteHeaded to email you now. :)
DeleteHi, Jessica. My 6 years old duaghter has brain stem glioma.
ReplyDeleteCould you tell me contact info of the clinic in Germany doing your DC/NDV vaccinations. We want to try this possibility.
My email: dsidelnikov@gmail.com
DeleteDmitri, I'm going through old comments, making sure I've responded to everyone, I believe I emailed you, am I correct?
DeleteHi Jessica, I'm about to turn 35 years old and was diagnosed with breast cancer at 33. Like you, I've tried A LOT of different paths to heal and witnessed so many courageous people along the way. I've shared my story via social media and blog at www.carlyhana.com (been on hiatus. getting back to it shortly). I'm committed to doing my part in making a difference in the world. As of late, I partnered with a company using the power of business to solve social and environmental issues. Our mission is to change the game in the beauty industry through truth and transparency by getting safe, nontoxic products into the hands and homes of everyone. This has been a more lighthearted and fun way for me to effect change. I'd love to connect on several different levels. I consider myself quite educated, and might be able to offer a few resources. Although, it appears you're quite consumed at the moment so no pressure if it doesn't feel aligned. I'm currently on 'maintenance' and receive treatment every 3 months. Keep up the great work you're doing in the world. Love & light. Xx, Carly
ReplyDeleteI checked out your site, and read more about your story/life. Dang if we don't have a lot of similarities, not the least of which is that we both have a "B" cancer, we're badasses, we're childless, we're divorced, we're diagnosed at arguably the prime of our lives. I like where you're going with the beauty products, and would like to learn more. I will email you - sorry it took me so long to respond! xo
Deletethrive@carlyhana.com
ReplyDeleteHeaded to email you now! xo
DeleteI just want you to know that I watched "My Final Days" and I was so inspired, in awe, amazed and blown away by your beautiful soul, face, spirit and attitude that I just HAD to find out where to you what an AWESOME human being you truly are! Your love story, wonderful husband and your spirit are just mind blowing! I have a 34 year old friend diagnosed with a Glioblastoma brain tumor 7 months ago and I pray for her everyday. I feel you will live a long and fabulous life because you are helping so many people with your story and showing ALL OF US how to REALLY live in the moment and not dwell on life's difficult struggles. May you be blessed everyday and feel as well as you can. I will hold you in my heart and prayers. Warmly. Randi (Beth) Aronson
ReplyDeleteThank you Randi! You are so sweet! It is very humbling, to have someone take the time to find me and give me a compliment. I appreciate the prayers, and the love, and I'm really sorry to hear about your 34 year old friend. If there's anything I can do to help, please let me know! There are a lot of amazing resources. I appreciate you and am sending you a virtual hug right now. :) xoxo
DeleteDear Jess I watched your story unfold the other night and was humbled by your courage and Dans devotion. We go through this amazing life and get one chance to get it right; we pray that we find the right person to build memories with, a soul mate to the very end...you are both so blessed to have one another. Some of us find love in college and yet you met Dan as a child; obviously God was working his magic right from the beginning.
ReplyDeleteAfter the story aired I immediately tried searching for you and was so happy that I came across your blog....I felt 'Bingo! I found them!'....until I was devastated to read Dans post. I've been checking on you ever since and was so happy to see that you are feeling well enough to post again.
I'm so sorry for all that you're going through, I've lost several members of my family to cancer and currently I'm my dads full time caregiver (he's battling
Thank you so much Jeannie, God certainly has worked his magic in my life. Many, many miracles, in my opinion. I am so pleased you googled me and found the blog! I'm looking forward talking more via email. And I'm so sorry about your dad.
DeleteSorry, my iPad had a glitch and wouldn't let me type anymore...
ReplyDeleteMy Dads battling Cholangiocarcinoma (bile duct cancer). I spend about 3-4 hours each night researching alternative treatments for him, of which I was glad to see he's taking many of the same supplements that you are. I noticed that you are taking Venom Toxin (he is too). I was lucky enough to get 10 bottles directly from LabioFam in Cuba. I was hoping you can tell me how many drops you're taking? I only have him on 5 drops in the am & pm, but noticed that you are taking the therapy every 4 hrs? Any input would be greatly appreciated...
I don't know if you have an easy accessibility to your toxin, if you don't, I can send you 5 bottles that are unopened and sealed....my Moms traveling to Cuba in Sept (22) and can replace my inventory (and yours if need be?) please let me know how I can help you... Email me if you can - Firegirly1@gmail.com (retired FF:)
Sending you love, appreciation, all of my strength, virtual brownies and a huge hug:) Rest well....xoxo
You are so sweet! I will email you. There are different types of the chlorotoxin, and the Labio Fam, he way I understand it, is homeopathic. I get it from a clinic that doesn't treat the venom. It comes and I make two different dilutions, in distilled water, and there's a nasal and oral administration. The dosing is based on my pathology and current cancer status, based off of the most recent scan results. Anyway, I will email you today and we can discuss more. I'm so pleased you found me, and I will keep your father in my heart, hoping for healing. We will talk soon!
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteJess,
ReplyDeleteI just watched your story on "My Last Words" and I'm in tears. I was diagnosed with a brain tumor at 29 (sound familiar), surgery at 30, paralyzed on the right side of my body, two years (so far) of OT, PT, vision therapy, chemo, radiation... but I'm alive! If there is ANY advice you could give me I would greatly appreciate it. Our stories just sounded so much alike that I had to reach out to you!
Thank you so much for sharing... it meant a lot to me to hear a good outcome.
Shannon
"My Final Days", I'm so worked up I forgot the name!
DeleteOh my god, it DOES sound familiar! Wow. You have been through a lot. I don't know what your current mental state is, by as far as advice goes, I like to remember that all we have to do is live long enough to utilize each little scientific advance. And that we are stronger together, that no one person has all the answers. That's why need to work together and share our knowledge/experiences. It will help us make the most informed decisions and help protect us. I'm sure you're familiar with the websites Astrocytoma Options and Our Brain Tumor Cocktails and Stories (both of which are listed in my resources page). Those are incredible resources, and a great way to educate yourself and connect with other patients/caregivers. If you want to keep in touch via email, let me know! I'm not as efficient or timely as I would like, but it's not because I don't care. I'll do my best! And about the title of the show, I like your title better. 😂❤️
ReplyDeleteI couldn't agree more... working together has definitely been beneficial! I did read your entire blog and I will certainly check out those websites. I would love to communicate through email (slchilds11@gmail.com), but as far as efficiency goes... holy cow you're quicker than I am! Lol. The title... oh my!
ReplyDeleteHi Shannon, I just sent a private email. I'm really not very efficient, I don't want to misguide you on my organizational skills. Ha! Hope to hear back from you when you get a chance. Take care!
DeleteI couldn't agree more... working together has definitely been beneficial! I did read your entire blog and I will certainly check out those websites. I would love to communicate through email (slchilds11@gmail.com), but as far as efficiency goes... holy cow you're quicker than I am! Lol. The title... oh my!
ReplyDeleteCan't remember if I emailed you yet or not. Brain tumor problems! :) Please let me know if I haven't.
DeleteHi, Jessica.
ReplyDeleteDon't know if you remember but I (and my wife Senga) met you in the coffee shop in Friday Harbour a couple of weeks ago and you've been on my mind ever since. I'm so happy for you that you are recovered from your seizure and I wish you many days without another. You are a very lovely and inspirational young woman and I'm very happy to have met you. As for the bike on the bus rack - it's pretty easy and once you've done it a couple of times you'll have no trouble. I'm sure the driver will help you get the hang of it. Much good fortune to you and Dan and if you are ever in South Surrey/White Rock we'd love to see you.
Geoff
Hi Geoff, of course I remember you! Both of you. :) What a fun, chance meeting at that coffee shop. The Bean, I think it was. Thank you for the compliments, and I appreciate the encouragement about the bike rack. I just know you're right, and it's nothing to fear, really. And sometimes that's all you need, a little encouragement. If we make it up to South Surrey/White Rock, I'll be sure to find you guys! I'm so pleased you found the blog, and chose to send a quick message. It's a wonderful compliment, and it makes me feel very special.
DeleteThis comment has been removed by a blog administrator.
ReplyDeleteHi Christine! I will delete your comment (with your email address in there), and will email you directly. :)
DeleteHi Jess - my husband was diagnosed last April with an anaplastic astrocytoma. In addition to radiation and chemotherapy, our oncologist also recommended use of the Optune device. Unfortunately, our insurance company will not pay for the Optune but I was wondering if you ever considered using Optune and if so, what made you decide not to pursue it. Thanks!!
ReplyDeleteOh that crazy cap, Optune. You know what, I would have looked into it back when I was bald, and I may revisit soon depending on this month's MRI, but it would take a pretty aggressively negative scan report to push me into using it. I'm really sorry your insurance isn't cooperating, that's just disgusting. If he wants it, he should be able to contest that with doctors letters. It seems there's enough data to show the effectiveness.
DeleteDear Jessica,
ReplyDeleteI have a very dear friend battling an Astrocytoma II-III for 7 years. We seem to be running out of options for him and reaching a critical point. I would be thankful if I could email you a brief account of his illness history and receive advice from your experience. BTW I am writing to you from Iran, so we do not have access to many trials and treatments here, but we will try to do out best if you recommend sth. that is not here.
Best Wishes
Salma Talebi
Hi Salma! I'm so honored you reached out. And I'm very sorry about your friend. You can respond to this with your email and I will reach out. Of course, I'm not a doctor, but I will help you in any way that I can.
DeleteHello,
ReplyDeleteI am thinking about working with DC therapy, would you be willing to chat offline (in email) about your experience?
Thank you
wantinginfogmb@gmail.com
Hi Unknown, I just emailed you! :)
DeleteHi Jessica!
ReplyDeleteI just came across your blog and I love the work you are doing bringing awareness and education to patients living with brain cancer.
I am reaching out to spread the news about PatientBank. We help patients everywhere own their health by gathering and storing all their medical records. I would love to provide you with a free trial code in exchange for your feedback - then you could gather and store all your medical records in one place!
Anyway, hope all is well!
All the best,
-Kevin
Hi Kevin,
DeleteI checked out your website, and the system looks really neat! I have a few questions, though. Do the records include images, or is it just documents? Also, I saw that it's $30 per record. That could be quite spendy if you're wanting to get absolutely all of your medical records pertaining to your cancer. (I have a big 'ole briefcase for all my files, I honestly can't imagine the fees that would have been associated.) This service is truly brilliant, and necessary, though, so I'm happy to learn of it!
Hi Jessica,
ReplyDeleteI’m working with a team in development on a new content platform for cancer patients + their families. We've come across your online voice, and we'd love to explore your becoming a contributor. I would love to discuss this with you further, so please send an email to ashley@equalityequation.co if you are interested :)
I'm looking forward to hearing from you.
Best,
Ashley Mason
Hi Ashley. I just shot out an email to you. Thank you for reaching out. I look forward to hearing more!
DeleteHi Jessica!
ReplyDeleteI am a two-time sarcoma fighter. Where do you get your rick Simpson oil? My email is gaanelson@gmail.com
Love & Light
Gabrielle
Hi Gabrielle, I'll email you directly. Looking forward to connecting!
DeleteJessica:
ReplyDeleteHello! I am a physician-scientist at Yale obsessed with glioma, we have an interesting story on PARP inhibitors and IDH-mutant cancers that may be of interest to you. Stephen from Astrocytoma Options sent me yoru info. Please email me at ranjit.bindra@yale.edu if you want some more information on our story. Rarely do i promote stories from our lab this aggressively - we at Yale are just very excited about the data.
Hey Jess and Dan, I hope you get to read my comment. There is a site called Alliance for Health. They recently posted an article about IV Vitamin C and how it can kill cancer cells. I think it is really important for you to check out. I am currently going through some of these and other IV vitamins and something called Poly VMA to kill off viruses in my body that have made me very sick. Poly VMA is also used for cancer patients.Hope this helps. Carol
ReplyDeleteJessica,
ReplyDeleteI'm a new reader and am wondering how you're doing.
Will you be posting anything new soon?
Hope you're doing well!
My name is Kort and I am still surviving through 2 yrs with a brain tumor. I am sure you are overwhelmed but you did an awesome thing for a lot of people by putting your story out there. I found you thanks to my ENG102 class Professor who is using your blog as an example in his course curriculum. Your story gets out there so much more than you know. Keep fighting, and thank you.
ReplyDeleteHi Jess! I have a story I would love to share with you as well as discuss you. If you are feeling up to it I would love to talk to you. My email is nicholasboro075@gmail.com. Thanks, hope to hear from you!
ReplyDelete- Nick
You’re amazing. Your strength and positivity and will to live are so inspiring. I read your recent blog post about this new diagnosis of Hashimotos. I too have Hashimotos Disease. After I had my son, it got 100 times worse. As you know stress and hormone changes can be triggers for it. I’m sure you’ve looked into all these things, but like you said, we can all learn from each other. After switching many doctors, because I just couldn’t accept that I would feel this shitty forever and have this disease that could to so many other health problems, and reading a million books... I found a doctor that has helped me so much. Going the functional medicine route for my Hashimotos has helped so much, and given me hope. Diet changes like no gluten, soy, corn or peanuts while incorporating supplements like high doses of sublingual vitamin D, Liposomal Glutathione, Zinc, Selenium, probiotics, and instead of prescription thyroid meds like synthroid or levothyroxine, I now take GTA Forte II from Biotics. Just some suggestions that have helped with my Hashimotos symptoms tremendously. ❤️
ReplyDeleteHi Jessica,
ReplyDeleteI somehow stumbled across your video on FB this morning and when I say it was amazing surreal , I was in tears within 5 mins . You were essentially telling MY same story !! I’ve always been told I should write a book or blog and just never knew where to begin , I started writing a book not knowing the actual outrageous costs in publishing ! I was dx w a brain tumor 3 months before my wedding day at the age of 21, in 1994. I had just graduated from college , had landed my dream job , my wedding was planned and paid for and now enter CPC or choroidplexuscarxinoma. I was told I needed emergency surgery like that night because they were inside of disease progression and my neurosurgeon at Yale pretty much told me it was so bad he wasn’t sure I’d wake up the next day . I was so worried about losing my hose before my wedding I was willing to ignore these pleas from my Drs? Imagine hair ? I was willing to die to keep my long hair :/ after my parents and my fiancé pleaded w me to reconsider , I wrote a will and my advance living directives as instructed by my medical team . I had family members donate 5 pints of blood so I wouldn’t need donor blood and I too also sat down the night before unable to sleep and wrote goodbye letters to those closest to me . My surgery was 15 hours I remember waking up w my arms in restraints because the tube was still in my throat and my mother knew I would try to pull it out ASAP ! My deficits were minimal at this time , I was lucky ! It wasn’t until I suffered a stroke a week later after my first grand mal seizure that I would be told by drs that I may never walk again or be able to have children . My fiancé and I had already been together 6.5 years and we wanted to get pregnant on our honeymoon . This was not welcomed need as one could imagine . I started an exhausting physical therapy regimen determined to not use a walker or need to be pushed down the aisle in a wheelchair , the day before my wedding after an exhausting 6 hour day of therapy and pool walking I took my first steps unassisted by a medical device . I walked down the aisle w only my fathers arm assisting me . Fast forward two decades and many , many chemo & radiation treatments later I’m still a survivor , once again going thru chemotherapy for a MPN caused from my type of chemo in the 90’s but I’m here , I’m alive and I’m the mother of 4 amazing kids , all of which I carried and delivered w the help of some amazing docs willing to let me take the risks and live my dream of being a mother . It wasn’t an easy road , but worth every minute . My husband is an amazing man , who also has stood by my side every step of the way -even in my steroid tirades when I wasn’t so easy to love and made Linda Blair seem like Mary Poppins he’s still here . We have two sons ages 23&21 and identical twin girls who will be 13 next week . They have all known how to care for me in the event of a seizure , I have a medical lifeline hoked up to my home in case of an emergency one of my kids couldn’t handle . It’s programmed to call an ambulance , my husband & my parents . I’ve been thru 27 major operations in the last 22 years , I’ve had every non life sustaining organ removed and then some . I am a volunteer counselor w the ABTA & NBTF and I cochair an epilepsy support group in hopes to give back to others the faith & hope that was once granted to me through so many prayers & well wishes . Besides I made a deal w God that day if he let me live I would spend the rest of my life trying to make a difference . Please feel free to contact me if you need to vent to someone who gets it and can resonate to your feelings . Keep being the amazing inspirational woman you’re ! Stay positive & Never stop fighting !!
Hi Jessica, I saw the documentary of your story and it was so moving! I admire the relationship you have with Danny. I noticed you wear a thin ring/rings on your wedding finger. I may get engaged to my boyfriend eventually and would love a simple ring like that! If you don't mind me asking where you got it/what kind it is? Do you also wear a wedding ring with it? <3
ReplyDeleteHi Jessica - A long time reader of your blog, but I've never reached out before. (not familiar with the documentary though).
ReplyDeleteI'm writing to learn if you could share what DNA sequencing company you used and mentioned in your April 2018 post?
Also, I wanted to share a "therapy" I've been undergoing to about a year to help me deal with some of the PTSD/emotional trauma of medical issues. I'm usually 100% Western medicine, but I've found that this has started to help me deal with some of the emotional damage that comes from constantly fighting for your health. It's called Somatic Experiencing. When I asked my clinician how she would describe it she wrote the following: "We work with your physiology to attempt to regulate your nervous system. Trauma disrupts the sympathetic and parasympathetic nervous system functioning, and so we use the physiology to bring the system back into regulation and resolve the stored trauma." I find it takes the edge off. I see someone on the East Coast, but it seems to be a connected community and I'd be happy to ask for a referral in your area.
Thanks
Could you please share what company or test you used for this: 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.
ReplyDeleteHello,
ReplyDeleteI was diagnosed in 2016 with an astrocytoma grade 2 at 36. I had the resection done in Alaska and followed up at UW. The pushed so hard for chemotherapy and radiation but after I declined because the research showed it didn’t work, they no longer speak to me. I was a paramedic/firefighter and saw a lot of people die from chemotherapy and radiation and knew I didn’t want to die sick. My wife has supported me through this and will not give up, I looked through your medication list and we are taking the same crazy stuff. We just reached out to a dr. In Canada and he has seen a lot of success. I wouldn’t trade my tumor for anything, I’m. a better person and I am closer to God. I am also annoyed that insurance does not pay for cheap healthy medication but will gladly radiate you squash. I’ve talked with dr. Seyfried on the east coast and he says stay away from conventional treatment for astrocytomas but put me on a low protein ketogenic diet. If you have any questions, feel free to send an email. My wife does all the heavy lifting as far as research is concerned.
www.9livesdoss.com
levidossak@yahoo.com
What a story ... just read about everything you have written and watched the film too. Sending all positive vibes I can!
ReplyDeleteI'm in one of these stages searching for answers to numerous questions regarding brain tumor. I would love to take a second opinion if the treatment plan and I want to know the best Neurosurgeon in Chennai . I would love to know if there can be anything done without a surgery.
ReplyDeleteI've just watched your story and both you and your journey are and have been incredible. im glad I found this blog page to follow up on your story ... you are a brave strong beautiful woman and I hope you and your husband both have many more blessed years to come ❤
ReplyDeletehttps://youtu.be/ujVJ01bGlB0
ReplyDeleteMed Beds next year. Keep the faith girlie.
God Bless you.
Sherry Colorado Patriot
Sorry… It’s Sarah again. I should have asked you what section of your brain has the tumor? I think I assumed right or left, but there are other sections as well. Thank you!
ReplyDeleteJess and Dan,
ReplyDeleteI watched your story and want you to know how precious you both are! Jess, you are in my prayers for God to COMPLETELY heal you, and Dan you are in my prayers for strength and guidance. Please know that there are a lot of people cheering for y'all and would love any updates you can give. If y'all are ever in Texas, you have a place to stay! Much love!
Jess.....I don't know if I am writing at the right place, but Israel just came out with a cure for glioblastoma.....I don't know if this is your type of cancer. I'm a retired nurse and know that this is usually the bad one. I hope this is information that might be helpful. You are so brave and beautiful and I love your and Dan's love story.
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Thank you for the update. Keep your head up the best you can and Just know that there are people covering you and your family in prayer.💗 If you ever need someone to talk to or even just to simply listen, please reach out. Sending you love, hugs and LOTS of prayers. 💗 staceytimmons77@gmail.com
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