Duke, “We’ve done all we can do”
We shipped the most recent MRI and data to my oncologist at Duke. She called Tina to share that it is her belief that there are not any hopeful treatment options available to me right now. That is, she doesn’t know of anything to stop it from growing. I have discontinued Vorinostat and will soon begin taking oral chemotherapy palliatively* — meaning for the purpose of extending life and alleviating symptoms. (Well, this does not resonate with me very well because I’m in a state of mind similar to when my cancer was first diagnosed — denial. I don’t feel sick. I’m not suffering from symptoms.)
What I’m suffering from is great riding weather, but knowing it’s too risky to be riding now.
*I’ll be taking Lomustine (one pill every 6 weeks) and daily Temozolomide and the next MRI will be in 6 weeks.
Surgery is not an option. Too much risk, and not much hope of success.
The previously mentioned NIH immunotherapy clinical trial probably isn’t an option either because we would have to wait several weeks for a chemo wash-out period before starting a new treatment, and they haven’t tested my tumor yet to see if I even have the gene to qualify for the study. I would also have to spend four weeks in the NIH hospital in DC far from home.
We’re not doing nothing.
We’ll make more treatment decisions and maybe some travel decisions too next week. I’ll continue with all the grass-roots efforts:
- nutrition, supplements, meditation, pranic healing sessions, acupuncture, etc.
I’ve been working on a series of paintings/drawings of my father’s Hawk tattoo.
Great picture, Ken!
I don’t know you but I have been reading this blog for the last year or so. I just wanted to say thanks for writing this to the world. I’m sure all your friends and loved ones appreciate this, but I am also sure there are many more like me that find great honesty insight from your words. Keep up the fight.
Continue to keep you and Tina in my prayers.
I remember that tat! lol ur dad was one cool dude from what I remember, laid back as hell, just like you dude
Ken, your inner strength and resolve in the face of setbacks is so inspirational to me. Peace to you and Tina as you together continue your cancer journey . I’m sending you both “Rusty” hugs. Stay strong.
Ken, I was sad to read your latest blog. It sucks you can’t ride your motorcycle:) I do like the painiting though. keep it up. Stay positive and happy and know you are inthe hearts of many all over the place. I have been doing some research Frankincense has been noted as a potent immunostimulant and anti-cancer agent in a variety of scientific studies. The essential oil has been shown to stimulate lymphocyte transformation (a measure of its immune system stimulating action, as immune cells are created which fight off specific invaders in the body). It has also been shown to be tumoricidal, which means it destroys the tumors formed by cancerous cells. Check out Young Living website.
Ken, like the others have said, continue staying strong and positive. I continue to keep you in my prayers. Your grace and strength are an inspiration and guide, and have been since you started on this journey.
I’m glad I know you. Your posts have been so thoughtful and helpful to many. Sending positive sunshine your way.
i DONT KNOW YOU
BUT I HAVE BEEN READING YOUR BLOG FOR A WHILE. MY HUSBAND IS NEARING THE SAME POINT YOU ARE. HE IS ONLY 37 AND WEVE BEEN DOING THIS FOR 2 YEARS ALREADY…BUT GUESS WHAT…WE ARE NOT GIVING UP…SO KEEP UP THE FIGHT…AND THE BLOG!
Thank you for contacting me. It’s kind of nice to know that I’m not alone. I hate that your husband is in a similar place as me but if that’s accurate then maybe that’s not so bad — because I feel pretty good and I know things could be a LOT worse. It’s going to be big decision making time for me soon. If you feel like sharing, I’d be interested in what you feel your next steps or treatment will include. I can be reached via email at firstname.lastname@example.org. If you’re not interested or don’t have anything to share now, that’s fine too. I’ll be posting my decisions in the coming weeks.
Here’s to all of us keeping up the strong fight!
Dear Ken, I lost my husband, Ken, 2 years ago on March 17th to a very advanced glioblastoma with a poor prognosis, 3months without treatment to 6 months with surgery and chemo. We opted for the debulking craniotomy but he was to weak for a busy Chemo course. We had 11 weeks together. Thank you for sharing your remarkable journey. Your strength and courage are an inspiration and hope to many. I pray that you continue your journey with the same strength, hope, courage, and faith. Love to you and Tina.