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My Shingles Update...and more devastating news
Hello my VDF family! First, I hope everyone has been enjoying a good holiday season and that most, or all, of us have many things to be grateful for.
I want to take this opportunity to update everyone on my shingles and some other news. I'm now into this thing for the 40th week! Yes, 40 weeks! During this time, I've been on lots of meds, which also included two different strengths of Fentanyl patches, none of which even phased me! I have a high tolerance to narcotics! I've settled on Norco and Lyrica for the burning and itching this dreaded disease has left me with, just above my right eye in the Trigeminal nerve. This is the location where the Shingles virus broke out. After 3 months of this, I was in the phase known as Postherpetic Neuralgia, or PHN for short. All websites I've visited say that if you still have pain after 1 year, you'll probably have it for the rest of your life. With only 12 weeks to go, I can honestly say that my symptoms have improved, but I'm not fully cured yet. Fingers crossed that I'll continue to see improvements in the coming 12 weeks. However, all this takes a backseat to the devastating news my girlfriend received towards the end of September. My Eve was diagnosed with a Stage-4 Glioblastoma, aka, an aggressive brain tumor that doesn't respond well to both chemo and radiation treatments. I'll give you all the condensed version of what's been happening since then. Eve underwent a craniotomy within 1 week of the discovery of the tumor. The surgeon was able to resect (remove) about 80 percent. During all this time, and due to our ridiculous healthcare system, Eve never received any treatments. A recent CT and MRI scan showed that the tumor had already increased to the point where any treatments wouldn't help. Eve's only option was another craniotomy to remove more of the tumor and finally begin her treatments. Eve is at Loma Linda Hospital as I type this and her surgery is scheduled to be first this morning. She requested that I not be there, as she didn't want me just sitting around in the waiting room for an unknown amount of hours. Her daughter, who is also an RN, will send out group texts to keep us all up to date. This surgery is merely a stop-gap measure to buy Eve some more time with her family and we have all made peace with what lies ahead from her chemo and radiation treatments. While I don't believe in miracles, I can certainly be hopeful. Eve and I have been together for more than 20 years and I am grateful for the wonderful memories we've made together. It's taken me since the end of September to fully accept what is to come and, while still difficult, I'm now able to deal with. Eve has been the biggest supporter of all my drum related activities and always looked forward to seeing what the next snare drum I would purchase to add to my collection. There's even a stack of 9 beautiful snare drums in her bedroom! Please send out positive vibes for my Eve for her successful surgery today and her treatments that will follow in the very near future. A heartfelt "thank you" goes out to each and every one of you! -Mark |
Re: My Shingles Update...and more devastating news
Mark,
Please let Eve know that your drummer brotherhood have her in our hearts. This is truly heartbreaking. Please send along our love and support. -Kurt |
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Thanks so much for your support. It means the world to me and I'll pass this onto Eve when I get to see her. -Mark |
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Re: My Shingles Update...and more devastating news
Mark,
Prayers are being sent from Canada!! Please keep us updated of the situation, when you can... Cheers |
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Thanks for all the good vibes! -Mark |
Re: My Shingles Update...and more devastating news
Mark,
Indeed devastating news about both you and Eve. To see your regular posts during all of this, one would never know that you are enduring personal hardship. You always seem upbeat and helpful to all of us, many of whom you don’t even know! May things work out for the absolute best possible outcomes for you both. My sincerest best wishes and thoughts to you. Josh |
Re: My Shingles Update...and more devastating news
Mark,
A very small difficulty is plaguing me right now (extremely small in view of Eve’s condition). In preparation to wrap things up in Maine this fall and make our way to a new place in Florida, I pushed too hard and ended up damaging my back to a level I have never experienced before. That was in early November and I’m still dealing with it now like it’s going to be some chronic thing. All along it has reminded me of what you are going through with the shingles as the pain has been a burning pain. You mention that, although you don’t believe in miracles, you remain with hope. That’s good. But there are miracles occurring as this unfolds. For example, I quote Josh Cohen: “To see your regular posts during all of this, one would never know that you are enduring personal hardship. You always seem upbeat and helpful to all of us, many of whom you don’t even know!” In my view, that is a miracle. It is not natural behavior. Natural behavior is selfish and lashes out. From your descriptions, we know your Eve hung in with you and you are hanging in with her. That is love in action and I believe that is learned behavior. It is not survival of the fittest. It’s behavior more aligned with commandments to love one another. Commanded because it is not natural. It comes from outside this world and is, by definition, miraculous. Miraculous - Oxford Dictionary: A surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency. Your pain, her pain, and the pain we all experience to some degree in life is nasty. But reacting against it with and in love is wonderful. Therefore, keep doing what you are doing. It is one of the things that has made this forum special, as for the most part it is sharing something we all enjoy a great deal and helping one another in it. Yours and your Eve’s soonest recovery is, indeed, hoped for! |
Re: My Shingles Update...and more devastating news
Try to stay positive if you can. Good thoughts sent for you and Eve. May 2023 be a happier time.
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Re: My Shingles Update...and more devastating news
I know exactly what you're going through. My girlfriend, (Who I can't see anymore), had three brain operations. I was only with her for the last one, but I know how tough it can be.
Regarding your shingles, I had it several years ago, my doctor gave me antibiotics and it cleared up in about a week. Hang in there, my prayers are with both of you. |
Re: My Shingles Update...and more devastating news
Mark. I just came across thus thread. I'm so sorry to hear of this news. For what it's worth you can count on prayers from our family in Illinois. Hang in there my friend!
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Re: My Shingles Update...and more devastating news
I also want add that after Mark post the original news of his shingles it woke me up and I got the vaccine a few days later. So thank you Mark for that!
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Re: My Shingles Update...and more devastating news
I just prayed for Eve and You.
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Re: My Shingles Update...and more devastating news
My heart breaks for you, Eve and your family, Mark. I know all too well how you are feeling. Absolutely sending positive vibes y'all's way. I wish there was more we could do.
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Re: My Shingles Update...and more devastating news
Mark sending prayers for you and Eve, Gods grace.
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Re: My Shingles Update...and more devastating news
Sorry to read this sad news, Mark. We are all pulling for you.
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Re: My Shingles Update...and more devastating news
Mark,
My prayers and blessings go out to you and Eve. I can't tell you how bad I feel. Please let me know if you need anything.................and I mean anything, even if it's just an ear to bend. You are truly one of the great guys on this forum and in life, and I am so sorry this is happening to you. Stay strong and know that all of us are rooting for you and Eve! With peaceful and hopeful thoughts, Alan |
Re: My Shingles Update...and more devastating news
To all the above posts from my wonderful VDF family, I send out a big "thank you" for all your support, prayers, good vibes, etc. It means a lot to me!
This is the first I've been on VDF for a bit now. Just so much going on in my life that even getting on my computer seems like so much work. Eve's surgery was successful, in that they were able to remove about 85% of a combination of the main tumor and satellite tumors. She needs to heal for about two weeks and, hopefully, will begin chemo and radiation treatments in the third week. It's going to be a long road ahead for Eve, but we take it a day at a time. As for my shingles, if anything good has come of it, it is that it has spurred many of my friends, and even some VDF members, to get vaccinated! Vaccinations, in general, are a very personal thing and everyone needs to do what's right for them. But, if my shingles experience has helped anyone to get vaccinated, I don't mind being the "poster boy" for getting the vaccine! I sent out a picture of myself, when the shingles was at its worst, to my personal friends. It wasn't pretty, but got them all to get the vaccine! I just don't want anyone to suffer from this dreaded disease when they don't have to! I knew I needed to get vaccinated, but just kept putting it of as I thought it would never happen to me! Famous last words! So, my VDF family, thanks, again, for all your support for both myself and Eve. It means the world to me!! -Mark |
Re: My Shingles Update...and more devastating news
Mark,
I`m glad to hear that all went well with the surgery...We (VDF) will be here anytime you need us... Cheers |
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Thinking of you and sincerely wishing for full, speedy, recoveries for you both.
All the very best... Cheers John |
Re: My Shingles Update...and more devastating news
Mark, sending more positive vibes your way brother. Hang in there, miracles do happen.
Btw, just got my second shingles shot today. Tommy |
Re: My Shingles Update...and more devastating news
Update 3-15-23
Hello all! It's been quite some time now and I just wanted to post an update on my girlfriend's condition. So much has happened in a few months and I'll spare you all the details, but here is what's important... Eve transitioned from palliative to hospice care last week. A hospital bed was brought in and set up in her dining room. It's already been a handful of days that Eve has discontinued to take in nourishment and water. At this time, she is only being given her meds to help with her pain and keep her comfortable. I'm not a religious person by any means, but I hope and pray for Eve's pain and suffering to end soon. Tomorrow is my birthday. It will be one year ago tomorrow that Eve recognized that I was having a PE (Pulmonary Embolism) and drove me to the hospital, where I stayed for the next two nights. Being a guy, if I was by myself, I probably would have just gone home to rest, thinking there was nothing really wrong with me. I have Eve to thank for basically saving my life on my birthday. And, of course, it was just two weeks later that I got my wonderful shingles! -Mark |
Re: My Shingles Update...and more devastating news
WOW, has been a rough bit of timing on everything. Glad for the updates, and remember there are many here who do not know you personally, but all of us are here for support.
Dump on us if you need - we used to call that a PRIMAL SCREAM moment in my youth. |
Re: My Shingles Update...and more devastating news
Mark,
Tough days ahead of you, my friend. Thank you for the update, and may you find peace and solace in knowing that you have done everything you could under terrible circumstances. I know Eve brought a lot of joy to your existence. Dwell on your shared lives together, not the sorrow …(so much easier said than done I know). Much good wishes for you. Josh |
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Godspeed to Eve. Strenght to you.
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Re: My Shingles Update...and more devastating news
Stay Strong , I can't imagine your pain and suffering on all accounts that have been going on.
You both sound like great people in my book. Wayne |
Re: My Shingles Update...and more devastating news
Still praying Mark, so sorry to hear this news.
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A big heart-felt "thank you" to all the responses.
-Mark |
Re: My Shingles Update...and more devastating news
To my VDF family,
It is with a heavy heart that I want to let all of you know that my girlfriend, Eve, passed away on March 18th at 12:22am. Eve is no longer suffering. We were "life partners" for more than 20 years and I will carry with me a lifetime of memories. My heart-felt "thank you" for all your support. -Mark |
Re: My Shingles Update...and more devastating news
Mark, my sincerest condolences.....
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Re: My Shingles Update...and more devastating news
Mark,
So sorry for your loss! Your love for Eve certainly was evident for all here to see. We hope you can be satisfied with the knowledge that you cared for her through her entire life journey. John/levelpebble |
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My sincerest condolences.
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Re: My Shingles Update...and more devastating news
Sorry to hear the sad news!
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Re: My Shingles Update...and more devastating news
Mark,
So sorry for your loss!! My thoughts are with you and your family... Cheers |
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Very sad. You did a good job, hang in there.
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I'd like to express condolences to your families.
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Re: My Shingles Update...and more devastating news
Again, I'd like to express my sincere thanks to all of you!
Looking through my computer, I found a wonderful video that Eve did, showing our drum room at the house she was renting back in November, 2013. Eve narrates the whole video! I recently viewed it and it brought a smile to my face. I'd love to share it with everyone, but not sure of the best way to do this. Do I just upload it to YouTube and provide a link? I don't even have a YouTube account and it appears that it requires a Google account? I don't even have that. If anyone can offer some advice on this, it would be greatly appreciated. -Mark |
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-Mark |
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