Hammer Down
Neurosurgery Follow-up
Today, eleven days after brain surgery, I returned to Emory to discuss the surgery, my condition and next steps.
The wound is healing well so they removed the stitches. Dr. Olson explained the post-surgery MRI to us. My first craniotomy back in August 2011, resulted in removal of all of the tumor (except the microscopic bits). This time, they estimate that they removed about 90 percent of the newly grown tumor. There was some tumor attached to the middle cerebral artery which is one of the three major paired arteries that supply blood to the cerebrum. Specifically, the sylvian fissure was affected. Attempting to remove tumor attached here carried the risk of impairing the use of my left arm. Olson decided it would be best to fight that part of the tumor by other means. Unfortunately, we don’t know if anything will be effective. The standard chemotherapy, temozolomide, that I was taking has not proven to be very effective for me. Also, the immunology trial I was involved with doesn’t seem to have been very helpful either. This doesn’t leave us with anything very medically hopeful. But let’s not forget that I do feel good and don’t have any neurological deficits.
Reality Settles In
Since the beginning of my cancer ordeal, I’ve maintained a gut feeling that I’m fine; I’m going to be fine; and that there’s no need to tackle any bucket-list activities. My really good physical, mental, emotional and neurological health had made it easy to feel confident and enjoy life without real worry. But the tumor recurrence has dealt me a thought-provoking blow. This cancer is as aggressive and devastating as the statistics reveal. I could die — soonish. That’s quite a revelation to think about.
Keep Calm and Carry On
We don’t yet know what the plan moving forward is going to be. We did not meet with an oncologist today like we thought would happen. Here are our expected options:
- Choose another clinical trial — Not too exciting. These trial’s are all experimental and meant more for future research rather than saving me. Potentially better than doing nothing but nothing to pin hopes on.
- Reinvigorate our alternative treatments — In the beginning I was very diligent about meditation, acupuncture and supplements. As time went on with good MRI results, I let these activities slip a little. Tonight, Tina and I went to a therapeutic yoga class. It felt really great. I am strong and yoga is absolutely beneficial to my total health. I will look to enhance my meditation practice and go back to acupuncture, too.
- Maintain dietary control — With good MRI results to celebrate and our recent birthdays and wedding anniversary, we reintroduced alcohol to my system. We used to love celebrating with booze in all it’s amazing forms. I don’t think an occassional indulgence opened the door for the cancer to come back, but I am willing to sacrifice that luxury if there is a chance it helps. I’m going to get back into controlling the alkalinity of my body; oxygenating my blood; taking natural immunity supplements; eating organic. My former passion for cooking has returned too.
- Positivity flow — I was convinced that passionate intentions and thinking influence real outcomes. I devoted time to this concept but had also let it wane. I now aim to reincorporate this type of intention into my daily life. I’ll battle this cancer with every resource I can muster.
Personally
I’m still intent on having fun and exploring myself and relationships. I’m having a great time connecting with friends and neighbors. I have been painting and drawing, introspecting and writing — nothing worth a damn yet, but it’s an interesting, often frustrating, exercise in self-discovery.
Burdened
The person most burdened by this life-situation is unquestionably my wife, Tina. That is the greatest tragedy for me.
I don’t have any fear of death impeding me. Rather, the desire to live and live well compels me. That’s why I titled this post “Hammer Down.” Time to live life full throttle.
18 responses to “Hammer Down”
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Ways to Help
Your thoughts, well-wishes, encouragement and positive vibes are a big help. Financial donations to my fight are welcome as well. Please visit my Donate page for an explanation of how and why donations are helpful.
Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 
I love to read your thoughts. So very nice to read your are feeling well. Linzy
Writing nothing not worth a dam, hardly. Like a Stephen King novel, I hang onto every word you write. Your strength reminds me often of your Dad. Good stock …..smile.
Love,
Mom
Well, you are my mom. Thanks, Mom!
Listen to your Mom. She knows you better than anyone else. At least, that’s what I tell my son Rusty. You and Rusty both are creative, independent thinkers and kindhearted souls with much to give the world. Your courage is inspiring and infectious. It’s in your genes. No gene therapy could improve on that.
I applaud your “Hammer Down” game plan. There are alternative chemo drug therapies out there. As I tell Rusty, Temodar is not the only game in town. Other GBM survivors never had TMZ or Avastin in their treatment regime and have had multiple setbacks, yet they live to help others fight their battles, too.
You two truly are in fights for your lives. Setbacks such as you and Rusty have had, can knock you flat for a time, but you two must pick yourselves up, dust yourselves off, and get back in there! Your loved ones will be at ringside, cheering you on. No matter what, you are “Winners” to us!
Dear Ken and Tina,
I am Kikka’s friend here in Florida. I met both of you in Nikki’s wedding. I read your blog. Ken, you are a writer!
Tina and you are in my thoughts and prayers. Maybe the doctors find some way to cure this!
Sirkka Koskinen
Dear Ken and Tina,
I am Stephanie, and I met both of you at Nicole’s wedding (I was one of the bridesmaids). Ken, I have been reading your blog and you are definitely a writer and an inspiration to live life to the fullest. I pray for the both of you and hope that the doctors find a cure.
Best,
Stephanie
Well said sir.
My love, you are not and never will be a burden to me! We will continue to “hammer down” together and live life to the fullest.
-vous et nul autre
A very clear and compelling blog, Ken! Thanks for sharing, and for being so transparent. Sharing our burdens with others lightens the load. You definitely have a great support network thinking about you and Tina, praying for you and holding out hope for a cure, and a peace that surpasses all understanding. I love your quote at the end. Live your life, and live it abundantly, friend.
Hi Ken, you are in our thoughts and prayers, you have a lot of your Mother in you also! Lots of love to you and Tina.
Ken:
Your positive attitude and determination are an example to us all.
Love,
Liisa and Ken
Ken you are an amazing writer and I am so inspired by your positivity. I am always thinking about you and Tina and I miss you so much!
– Cara
Ken,
I read every post. Know that I’m pulling and praying for you and your family. Hammer down, keep calm and carry on. Sending all the positive thoughts and good vibrations that I can over to you and Tina.
Ken — you’re in my thoughts and prayers daily! Your outlook and positivity on life is amazing to me. stay strong.
Somewhere in your writing (I could never come close to your perfection). you used the word ‘best.’ I hope you will continue to fold that word into every fiber of your being, Allow yourself to focus on just that tiny word, and you will be surprised how many good things will emerge. (If I sit here in this wheelchair and do that, the first thing that pops up is your homemade ‘brew!) You ARE the best my friend, and I love ya for it! Hope to see you on my next trip to Atl!
Dearest Ken and Tina,
Well Ken you’ve done it yet again – managed to bring tears to my eyes with a spectrum of emotions. Your determination and gusto for life is incredible. Your positive outlook is a reminder to us all of how valuable life is. Your love for my cousin is inspirational. The two of you make a magical couple!! Thinking of you often and always sending you loving thoughts and prayers.. xoxo Nikki
Dear Ken,
Your blog is so therapeutic for us all. It sets our lives in order….so many people think they “have it so bad” but gain such positivity and hope from you. God bless you and Tina, and we continue to pray for your complete recovery. I have learned over the past few months, with losses in my own life, that life is to be lived a second at a time. Cherish each moment and those in it, because we are not promised tomorrow. You are such an example of that! Keep smiling and gain strength from your love for each other, and all of us who send you love and prayers!
Annie Brown 🙂
Ken, I know I’ve said this a couple of times, YOU Sir are truely inspiring! I can’t seem to come up with another word that fits. As a person that continues to deal with demons and depression I am inspired by your power of your words and how they touch peoples soul to keep moving forward a not look back.
Keep writing, fighting and inspiring us that hold on to your word of Hope!