My blood results this morning were great. Everything is at normal levels. No blood found in urine either. Blood shot eyes are probably just conjunctivitis — simple viral infection I picked up from being out in public. So I won’t be out on the town, celebrating with the masses tonight. Just a cozy relaxing evening at home with Tina (eating a meal being delivered by one of our gracious supporters).
Someone drink a glass of champagne for me.
Happy New Year!
Ken and Tina
Recently I have had the occasional, fleeting feeling that I am in My December.* I dismiss the feeling easily after giving it brief consideration and get back to focusing on feelings of well-being.
The other day, I glanced at the microwave to see what time it was, and the display read… END. (Creepy)
But now that I’m telling you about it, I’ll admit it worries me a little bit. And in addition to that, I’ve got some notable symptoms going on: a low white blood cell count, a couple days of inexplicably, constantly bloodshot eyes and possibly some blood in urine and stool. Pretty scary, huh? No, not really. It’s minor. I have no pain and I feel pretty good.
I have an appointment with my oncologist in the morning. I really need to see my white blood cell count rebound. So I won’t bid you a Happy New Year just yet. I’ll post the outcome of my appointment before then.
My disposition has not changed. Another Spring is around the corner for me!
Come what may,
*I think “December” is a common metaphor for nearing the end. I mention this in case my intention wasn’t clear. Hey, I studied math and art. I know little of language and literature. (Hell, I know little of math or art too.) However, I am learning a bit about quantum physics, metaphysics, nutrition, compassion and Love.
Tina snapped a photo of me painting labels for the 2012 batch of Kill-u-a. Notice that I’ve had to resort to using reading glasses. At least it makes me feel like I’m getting to experience “old-age” a bit.
How have I been?
- Physically, the new treatment is not as taxing as the previous therapy. I’m maintaining weight at 150 pounds. I’m too skinny, but I’m strong and feel good mostly.
- Mentally/Emotionally— It’s a strange time for me. I’m not ready to die but I give the matter due consideration. I have ambitions and aspirations still. But honestly, death doesn’t scare me in the slightest. I’m not giving up by any means. My thinking is extremely positive even though I do venture into darkness from time to time.
- Spiritually – I’m reluctant to blog about my beliefs regarding spirituality because it’s a very personal thing. What I believe, feels right to me. There’s not much point in sparking religious debate here. People of varying faiths support me. I appreciate and respect all support.
I have completed three days of my new chemotherapy (Vorinostat and Temodar). The new program is very regimented. I take Vorinostat for seven days, then take a break for seven. I take Temodar every single day though. There’s also a variety of pills I take to offset side-effects.
- Despite the strict timing of meals and taking drugs, it’s easier to take pills at home rather than go to a facility to receive IV infusions.
- Side-effects are also less severe than the previous therapy of Avastin and Irinotecan. But my previous experience with Temodar let’s me know that I CANNOT miss taking anti-nausea medicine or there may be Hell to pay.
I get a CT scan in early January. We’re hoping to see bleeding stopped. This will reinforce the decision we made to switch chemo-therapies. Later will come an MRI, where we will hope to see tumor reduction.
Thanks for reading my update. That was it. What is written below, could just be the incoherent ramblings of a man with a brain tumor who thinks he knows better than others.
Every man takes the limits of his own field of vision for the limits of the world.
― Arthur Schopenhauer
This has been a recurrent theme in my experiences and interactions lately.
Just before publishing this post, I did a search to see how many people were diagnosed with GBM in 2012. I stumbled upon a comment to an article that threw me into a tail-spin. It began,
Positive thinking is all fine and dandy, but it’s not going to save anyone’s life.
Well of course I know that I’m not going to be cured by positive thinking alone. The comment continued,
…positive thinking contributes nothing to the end result.
I replied sternly to the comment, which can be read here: http://www.news-medical.net/news/2006/01/02/15159.aspx?reply-cid=f2b13d48-f48f-440a-bff7-424b3861c6ff#id_f2b13d48-f48f-440a-bff7-424b3861c6ff
It’s the comment by HopelessTomorrow on Oct 21, 2012.
I have heard it said many times that the body can heal itself of ALL maladies. It requires serious conscious effort such as nurturing the body, mind and spirit properly. Only part of recovery is medical treatment. There are other components that most of my medical doctors don’t seem to care about.
I have been listening to guided meditations every night lately. Sometimes I listen to relax. More often I listen to healing-centric meditations. I think everyone could benefit from meditation.
I am taking a lot of supplements now. Previously Duke advised that many supplements would interfere with the efficacy of chemo. I don’t refute that, but I am now also under the care of Dr. Bhatia of Atlanta Center for Holistic and Integrative Medicine. She’s a medical doctor also well-credentialled in holistic medicine. She was on the Dr. Oz show recently, which I suppose speaks to her credibility. She prescribed several supplements that will not interfere with chemo and will keep my immune system strong (and my chakras balanced). There is some level of assurance because of Dr. Bhatia’s high profile. But I really miss Lisa, my previous acupuncturist/practitioner of Chinese medicine who recently moved out of state. (Thank you, Lisa, for caring for me along my journey.) I may have to venture over to Buford Highway and find a wise, old Chinaman.
Yoga has been a great healing tool for me. It keeps my body strong. It calms my mind. I think everyone could benefit from yoga, too.
I’m prescribed lots of drugs that MIGHT help the cancer and they generally make me feel very bad. They hurt my body. So doctors prescribe more drugs to help cope with the side-effects. One drug that has been marginally effective is Marinol, which is synthetic THC (one of the cannabinoids in marijuana). It helped a little bit with my nausea and lack of appetite. But I have been to places where medical marijuana is legal and I know first-hand that real marijuana is much more effective than synthetic. The real deal has many more cannabinoids that make real marijuana a much better option than whatever drug companies concoct and the FDA allows me to use. Unfortunately I live in a state where marijuana is not legal even for medical use. I hope that anyone opposed to legalization of marijuana can take the word of those who suffer from terminal cancers, HIV, chronic pain and PTSD that marijuana is a helpful, healing, natural herb to be embraced — not a dangerous drug. Instead of paying a lot of money to drug companies for barely effective, synthetic medicine, real help could be both affordable and available to me.If that’s not good enough, then look at the science. Research has been done for decades and around the globe about how marijuana can be used for more than treating symptoms — it could be a primary treatment. I don’t want naysayers to have to get cancer in order to reach the level of desperation to look into the facts of how marijuana provides real hope and healing. But I also don’t want my freedom and health to be restricted because of ignorance and greed. If legalization comes up for vote where you live, please help. I don’t want to move away from my home in Georgia. I don’t want to break the law. I want to be free to do what I know can help me. Regulate it, tax it, enact reasonable laws that balance public safety and liberty. I would be happy to debate the issue with anyone not convinced.
Welcome to the Club
Last week I was contacted by two people newly diagnosed with glioblastoma multiforme. Brain cancer hit me out of the blue. It’s catching others by total surprise too — appearing suddenly with no cause with which to attach blame. There is a grueling, life-changing journey ahead of these people. I fear our society is in need of big changes that just aren’t going to happen until things get much worse for many more people. If I could appeal to my friends to make one change, it would be to start with food. Be mindful of what you eat — of what you feed your children. Food and eating right could be so simple. Unfortunately, money, greed and power have convinced us over time to nourish our bodies with crap that is making us fat and sick.
Skip down to Straight Talk if you’d rather just hear the meat of the matter. If you’ve got nothing better to do, I recount, below, the day’s excitement in pretentious detail because it makes me smile.
After my MRI yesterday morning here in Atlanta, Tina and I flew to Durham, NC (for an appointment at Duke the next day). We played — pretending we were getting away for a romantic vacation. We flew for free due to the generosity of Southwest airlines, but we had to go to Orlando, FL first. (I know — it doesn’t make any sense (traveling 950 miles to go someplace 350 miles away) but those are the facts.)
Once in Durham, we ate wonderful tapas at a hole-in-the-wall Italian/French/Spanish/Peruvian cafe (Meelo’s Restaurant). We declined dessert because we avoid sugar now. José poured us a complimentary Limoncello. The illusion of an exotic vacation was working. Then, we bedded down in the Quality Inn.
In the morning, we breakfasted with the other guests of our all-inclusive accommodations. I loosened my dietary reins and ate a waffle doused in syrup. I didn’t give the ingredients a second thought. That was a damn good waffle.
Then the hotel fire alarm blared for a minute. Hotel staff scurried about, clearly not expecting a fire drill. But none of the twenty or so guests seemed to even notice it. I got up and looked around. If a fire alarm is a-blaring, seems like a good idea to take heed. Finally, I overheard a manager tell someone it was a false alarm. Yet, no announcement was made to the dining crowd. It all seems a bit David Lynch to me. That ended Vacation.
After clinic check-in, blood draw, clean-catch urine sample and a very long wait, we were finally seen by my neuro-oncologist. I think Katy is a fantastic doctor and wonderful person. She delivered the news with an alarming directness.
There has been considerable and concerning tumor growth and a lot of bleeding.
“What do we do?” I ask.
Get control or succumb.
This news froze me. Katy faced me closely, looking hard into my eyes. My silence worried her. Usually I would be bombarding her with many suggestions for and questions about my treatment. But she snapped me out of the stillness and we talked. She was surprised that I had not been symptomatic, that is, had a seizure. It’s time for a new plan and there’s no time to waste.
Tina was wrecked — in no condition to drive us to the airport. I was my usual calm, collected self. I switched my focus to not having a seizure while driving to the airport really fast (and safe).
To get back home on these free Southwest medical passes, we were going to have to fly from Durham, NC to Nashville, TN to Houston, TX and finally on to Atlanta. That’s insane and wouldn’t put us home until almost midnight and it was only 2:00 pm. So we dashed over to an AirTran gate that was about to depart for a direct flight to Atlanta. The wonderful gate agent, Therese, defied the captain and held the plane for us. We paid full fare but sometimes getting home is priceless. Our good friends, B & D, retrieved us from the airport with only a moment’s notice. Tina called AirTran to discuss the airport situation and commend the great service. They comped us tickets for our next flight.
We attracted a lot of good fortune today despite the bad news. I sit here writing and recounting the day without a worry. Odds may be against me but it just doesn’t feel like my time. I hope Tina is having pleasant dreams. It’s so difficult being the caregiver. (Or at least, “being MY caregiver?” I’m quite difficult.)
MRIs are done about every two months. The tumor grew about 2 cm since my previous MRI. Before that it had shrunk about 25 percent. Chemo is effective. But the cancer seems to adapt to treatment. There are other chemo options available. Most likely I will trade in Avastin and Irinotecan for Temodar and Vorinostat. The side-effects of these drugs will be every bit as unpleasant as that of my previous regimen. But they are taken orally rather than by IV infusion. That’s a good thing.
I’ve been getting a lot of friendly reminders that I have not published an update in a while. Last night, a good friend asked me in an email how I am holding up. Since I know other people want to know the same, I’ll share my response to him with you now:
I’m doing well. I feel great. Strong all around.
Treatment deals me a blow every 2 weeks but I rebound.
I feel love everywhere. It heals me.
That really says it all. I HAVE been writing blog posts — just not publishing them. Content is usually me rambling about very personal thoughts (that I end up deciding people don’t want or need to know) or proselytizing about health. Upon my own editorial review the day after writing, I decide not to “go to press.”
This coming Monday I get another 4+ hour infusion. I want to dread it because it makes me feel horrible. But I can’t let myself succumb to the negativity of dread because these drugs are part of my treatment and I will be thankful for them as long as I am making progress.
Then on December 17, I get my next MRI then travel to Duke to hear what my progress is and get their recommendations. Anyone interested specifically in what I do from a nutritional and holistic standpoint, I’ll post more about that next time. While I mainly post the good stuff that is happening for me, there are plenty of tough times and rough side-effects to deal with.
— THE END —
Posts That Never “Made It”
Here are a couple excerpts from the cutting room floor:
I’ve been doing the Chopra Center’s online 21 Day Meditation Challenge (www.chopracentermeditation.com). I do the meditation at night and last night after writing all the above [I had written a long post about my cancer being a “Godsend”], I put on headphones and listened to the next meditation. The topic was “Living Gratefully.”
The crux of this meditation was basically: By being grateful for all that you have and expressing that appreciation in your daily life, you open a channel through which abundance can freely flow. That is the attractive power of Gratitude.
This has been working for me all along. I haven’t been worrying and complaining about my cancer. I’ve been appreciating and embracing the changes it has brought to my life. And I’ve been flooded with an abundance — of love, generosity, good health and happiness.
…I recommend watching the documentary, Happy (click here to watch the trailer). I found it interesting and enlightening. Hell, I think I wept during parts of it — but I’ve had brain surgery. I don’t expect you to get choked up — just inspired.
Today the weather was beautiful. I spent a couple hours in the saddle [of my motorcycle]. Riding is one of my “Flows” — that is, something I can lose myself in. Engaging in activities like this impact our happiness. I also often lose myself in cooking and going to a metal show. Lately I have been in my studio, getting lost in painting and artwork.
I relearned a lesson by the example of my father-in-law over Thanksgiving.
He noticed a noise in my car when he drove it, and brought it to my attention by describing it. I claimed to not know the noise. So what better male bonding activity than checking out the engine. Well, I never knew too much about engines. I’ve always wanted to. (Side note to Wrenchers: I did do all the Rat Bastard recommended performance mods to my 2000 Shadow ACE myself.) So after 11 years of dependable Honda motorcycle engineering, I got the itch for the rumble and pride of American-made (Harley-Davidson). I couldn’t afford new and preferred a ratty, mean look anyway so I bought a used ’82 Harley FXR (shovelhead) — a shaky, smoky, oily rocket of chrome and steel that needed a lot more love than I knew how to give it. Since the price was within budget I figured it was the perfect way for me to learn by doing. That didn’t go so well, so it wasn’t long before I tracked down the nearest independent bike mechanic. Ron at All American Cycles has been helping me out (i.e., rescuing me) since 2009.
The lesson: Take care of your stuff, even the small details. We went out to check fluid levels. He popped the hood and I went to the garage to get a rag. I look back to see him picking leaves out of the hood vents and crevices. Simple tasks to maintain “health” and promote longevity.
While the men were outside checking oil, Tina’s mother was fitting her for a dress. When money is tight and the clothing budget is slashed, it’s handy to have a mother who is a clothing designer/maker.
Thanks for your help over the Thanksgiving holiday, Ken and Liisa.