January MRI
We learned yesterday that the tumor has grown and is currently about 8 x 5 x 6 cm. I have been feeling pressure in my head and taking steroids to combat the swelling and pain.
One opinion is that we did an MRI too soon. We didn’t give the chemo treatment long enough to show effects. We should have just done a CT scan now to check on bleeding, but other opinions said to go ahead and get the MRI done, which is kind of what I wanted to just go ahead and do.
We are in discussion with my local oncologist, Duke oncology and the NIH to determine the new course of treatment. It’s time to get aggressive again.
While the news was not good, I’m still hopeful and positive that we’re going to reduce this tumor and come out fine. I still feel well and remain mostly asymptomatic. I have a small blindspot that will probably keep me from driving for a while.
Detailed MRI Findings: Again seen is a heterogeneous T2 hyperintense intra-axial mass in the right frontal, parietal mid convexity extending intrinsic high T1 signal. The mass is increased in size from the prior study, currently measuring 4.8 x 8.8 x 6.6 cm. This is increased 3.1 x 6.4 x 5 cm. There is heterogeneous enhancement in the mass following contrast administration. There is increased mass effect as well with a 6.5 mm of right to left subfalcine shift. Previously, there was no midline shift. There is no significant surrounding vasogenic edema. No new area of abnormal fluid collection. Ventricular size remains within normal limits. The cervicomedullary junction is normally positioned. Pituitary gland volume is within nomal limits.
The topic of palliative care keeps coming up.
A Winter evening in the garden
This gallery contains 7 photos.
Had good blood results today. MRI is scheduled. This post is just me sharing some snapshots of me exploring my back garden tonight.
A Visit to the NIH
Briefly, What’s the latest — How am I doing?
It’s been a tough couple weeks but I’m pretty much doing the same as usual. That is, I feel well-enough. We consulted with the National Institutes of Health (NIH) in Bethesda, Maryland. It was a worthwhile trip although they did not have anything very inspiring to share. We continue the good fight however.
Details
Treatment
Three days ago, Tina and I travelled to the NIH to see if they have any good ideas, hopeful treatments or interesting clinical trials to suggest for me. They did not reveal anything that just made us jump for joy. They did however criticize my current treatment plan* as suggested by Duke. We also now have a better understanding of how I am likely to experience death and recognize the need for palliative care. I didn’t expect they would have the Silver Bullet sitting there ready to save me but I was disappointed it wasn’t a more encouraging visit. At least we can say we tried. I will likely participate in a simple data gathering effort they extend. They will pay for some future travel expenses.
*NIH critique of my current treatment
If Avastin is likely to blame for my ruptured appendix, GI bleeding and tumor bleeding, then why would Duke suggest I continue? If low-dose oral chemo (Temodar) failed me in the past, why am I bothering to try again? (The answer is that we are using it in conjunction with Vorinostat as an adjuvant therapy in hopes that it will all contribute in some way.)
We did ask them about DCA, Metformin, Quarcitin, DCVax, cannabinoids and Novocure. They don’t have trials for these options now so no useful information really.
A quick note on Novocure though. I did try NovoTTF. When the tumor grew, doctors said it would be foolish to continue. I just read study results that claim continuing is exactly what we should have done. There is a 6 year survivor (from early trials) that continued treatment through progression. Who knows — I can always give it another go if I want.
Clinical
A doctor at the NIH confirmed that space is getting tight in my skull. The more the tumor grows and my brain swells, the more likely I am to become symptomatic (seizures or other neurological symptoms such as affected vision, memory, speech, mobility and so on). In fact Tina and I have noticed a little bit of speech and vision degradation.
We ordered some special blood work to reveal details that medical doctors don’t bother to take into account when treating me. These results show that:
- my body is deficient in some nutrients
- I’m not detoxing very effectively
- I should cut or reduce gluten-intake
Psychological
So I suppose it won’t be too surprising to disclose now that I have had some of the darkest days of my journey thus far. I was quite depressed for a couple days. I honestly have not experienced depression since my ordeal began 17 months ago because I have had good overall health. Other contributing factors to my down mood could be the cold, wet, dark weather or the benzo drugs I was given to counteract mood changes from the steroids I’m on for brain swelling. Western Medicine just does not have solutions for me. So I will continue to follow the paths we have previously chosen — optimal nutrition, naturopathic, holistic, spiritual growth, energy-healing, physical health, strong, and bonds with family and friends.
But as I write this post at 6 a.m., on one of the coldest nights we’ve had all winter, I see my weeping cherry tree in the garden beginning to blossom and I am happy and hopeful still. So don’t worry about me.
I think it might be time to work in a vacation soon.
An NIH Option — Obliteration and Immunotherapy
The NIH will test existing samples of my tumor. If I am in the 25% of people with a specific gene marker, then I would qualify for an immunology study they are conducting. I would have to sit through apheresis as I did for the ICT-107 trial. They extract my white blood cells, whizz them together with experimental drugs and what-not to jack up my immune system to hopefully attack the cancer. Then I would have to take up residence in hospital at the NIH where they would proceed to completely obliterate my immune system with chemo and then rebuild it with my modified T1 cells. Risks are high and include infection and sepsis. This is not an appealing option. But this type of tactic has had success with other serious diseases.
Personally
The daily outpouring of love and support from so many people brings us much joy. Thank you!
My thoughts on the meaning of life, what is real and what matters seem to be in conflict with what our society and ideals have developed into. As my condition improves I can visualize myself becoming more outspoken and active in improving areas I perceive as failures in society. I have nieces and nephews that I think should be able to expect more fulfillment out of life.
More Disappointment
More Disappointment
I had a CAT scan on Tuesday to determine if my tumor stopped bleeding. It seems to have stopped. [Yea!]
But, It was determined that that tumor has grown about another centimeter. [Boo!] (Crowded skull = More seizure risk = not good for motorcycle riding.*)
More Drugs
Duke wants me to get back on IV Avastin tomorrow (Friday). Remember that Doctors speculate that the Avastin caused the bleeding in the first place but it’s also the best chance to shrink the tumor. It’s all a gamble.
Symptoms
Since there’s swelling going on in the brain, I’m going to start taking the steroid Dexamethazone (Dex) again. Because the tumor seems to be going strong, it’s finally pissing me off. Because of this, I’m already in a volatile mood. We know from past experience, that Dex makes me hyper and aggressive (or you could say, an ass – ask Tina). So they gave me some Ativan in case I switch from Jekyll to Hyde.
More Doctors
Next week I head to the NIH in Bethesda Maryland to see what they have to offer and suggest up there.
Wednesday, I had an appointment with someone new — a pranic** healer, Deborah Quibell. Later I will meet with her partner, one of the only ten Master Pranic Healers in the world, Hector Ramos (http://alicorninstitute.com/sessions/hector-ramos/), because he is in Manilla now for a few weeks time.
**Pranic Healing approaches energetic health and wellness in a clear and systematic manner, understanding the comprehensive energetic anatomy of the body and aims to help the client maintain a state of balance and good health on all levels – physically, energetically, emotionally, mentally and spiritually.
More Pain
Not physical pain. Mainly mental/emotional.
I’ve had a few angry moments lately. Luckily, Wednesday was a sunny day so I went out and put some miles in the saddle. (I couldn’t possibly have another seizure (right?). But I go slow(ish) and point away from pedestrians. [and went on four long walks with Tina]. Neighbors and friends are vigilant in supporting and helping us. [and we are both over the moon with joy that the Meal Train has started back up again!]
Note: Text indicated in BLUE above was snuck in by guest writer and caregive, my beautiful, patient wife whilst I lie sleeping.You could tell it was too cute for me to write, yet it’s all true.
Bedtime — More Infusions tomorrow
I’m going to hate getting in that infusion chair again. Looking around at a bunch of poor sick bastards. It’s kind of friendly and comforting actually. But i I thought I was in a bad mood yesterday, watch out for me on Friday.
Sorry I didn’t have any useful information to provide to others going though this too. If you haven’t seen Chad Mossman’s blog, he captures great info and data bout his journey. It’s a worthy read Aqt http://aheadofcancer.com/
Mommas don’t forbid your babies to ride motorcyleS. Just teach em to be smart , safe, fun, thoughtful
Ready for 2013
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
Cognitive Dissonance
My December
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)
Bloodshot
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,
Ken
*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.
The Human Condition
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.
New Treatment
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.
Next Steps
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.
Holistic
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.
Drugs
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.
Love,
Ken
MRI Update 12/18/12
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.
The Trip
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.)
Straight Talk
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.
Perseverance
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.”
Next Steps
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.
Nature brings Tina joy. Our home is peppered with animal imagery and figures.
Example 2
…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.
Flow
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.
Example 3
Tina’s father helping me with the car.
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.
Tina’s mother fitting her for a dress
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.
For Rusty
How am I doing? Well, I’m doing fine. Hell, today I suited up in full leathers and rode my sled around Atlanta on a perfect sunny, brisk, Fall afternoon.
Chemo was five days ago. I feel like shit for about three days after treatment but improve quickly beyond that. I see people out and about all the time. I look great (I’m told) — good color, energetic, positive. I must be doing really well. I believe that I am. I believe it with an intensity that may will it to be so.
I thought Rusty looked great; sounded great. He and I could beat this cancer.
Rusty died a few days ago — right around that damn 14 month statistic. Writing a bit about him now stirs up powerful emotions and contemplations in me.
Rusty and I pointing to each-others surgery wounds.
GBM brought Rusty and I together at the end of 2011. I’m pretty sure it was his mom that found my blog and connected us because of our similarities (age, diagnosis, surgery, etc.). Rusty’s grand mal seizure was about a month after mine.
His mom was right. Connecting us was a good thing. It’s valuable for me to speak with anyone going through a similar journey. But to have another dude, my age to really, really talk to and compare notes is so much more. Rusty and I hit it off and became brothers.
Rusty didn’t live in Georgia, but I was able to meet him in person while he was visiting Atlanta. Rusty was a proud father. He was generous in every way. He gave a lot of love. And his salutation of preference was “cheers.”
Love to Rusty’s family from Tina and I.
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 