Tina and I had our first non-medical trip out of town for fun (you could call it a vacation, I suppose). We escaped to southern Florida to spend time with family, connect with the majesty and power of sea, sun, and beach. And enjoy the abundant nutrition and flavors of the sea as well as excellent, local organic fruit and vegetables of Florida. Tina’s cousin’s husband is a commercial fisherman so we ate only fresh catch all week — expertly and lovingly prepared.
So this post feels like it wants to be about my current all-around treatment plan and other critical aspects of our* fight. *Our, meaning a fight in which Tina and I are both fully involved.
Important — Loving Support
Could be any one and/or many people but a loving caregiver/partner has proven invaluable to me and I see the power in other couples also fighting together. My friend Rusty strove to find this connection during dark days. I admired his spirit and drive so much. Craniotomy head wounds be damned — they didn’t stop Rusty from trying to talk to a pretty woman. Mothers, siblings and communities are invaluable, but a lover and a soul-mate can have vast powers of healing. (Cheers Rusty! — I know you’re still seeing me through my fight. I miss you.)
FOOD AS MEDICINE! I may have mentioned before being compelled by various speakers and books and documentaries to embrace some more strict nutritional practices that will be new for me: I’m going back to serious decrease of eating meat and animal products.
- Forks over Knives documentary helped influence this switch. If you want to ask me what’s wrong with eating meat, watch this movie for answers. The China Study reveals interesting data about cancer and illness and meat and plant diets.
- Eat mostly plant based and whole foods.
- Juicing and Raw foods. We had excellent, healthy, delicious raw foods at Christopher’s Kitchen in Palm Beach Gardens.
- Budwig protocol (Budwig Yahoo group.) There have been enough support stories for me to keep this integrated into my daily plan.
I dislike popping dozens of supplements throughout the day, but I do so under the advisement of a holistic and integrative healer. I now take daily:
- Alpha-lipoic Acid
- Vitamin C
- Ortho Biotic
- Methyl B-12
- Stamets 7 (mushroom extracts)
- Fish oil
I’m not ready to quit checking the tumor status, so we will continue with MRIs. Might as well be on some chemo. I’m taking CeeNU now, with minimal effects, I think. Minor morning head pressure keeps me on a daily regimen of steroids which messes with my cheery personality and I’ve had a voracious appetite.
- CeeNU® (chemo)
- Levetiracetam (seizure control)
- Dexamethasone (steroids for brain swelling)
Physically, Mentally, Emotionally
I’ve been sucked of energy maybe since I started this new chemo. I’m wore out from long beach walks, but it’s just in time for Spring weather in Atlanta and healing in the garden and getting back to yoga and strengthening my body. I’m in a good place otherwise. I just have to support Tina more. She does most of the frustrating work of keeping me on task, and coordinating schedules/appointments. She’s amazing.
Vital Energy Healing
I continue to meet with two Pranic healers who remove congested energy from my tumor zone. I feel the effects of this treatment. Tina was able to take over duties while in Florida, encapsulating and disposing of the bad energy in salt water. Maybe it’s easier or makes more sense for some people to pray to their chosen deity. For me, I try to connect with everything that is around me and in me, which is god to me.
Visualization and Intention
I visualize my tumor encased in cyan illumination with white-violet beams attacking the tumor. This may become a painting soon so it can just be there to view anytime. Meditation has waned but will also pick up in Spring. I know a good Buddhist meditation guide whom I may be able to bribe with good food.
Or at least hobbies or interests. I know I dare not ride my 750 lb. Harley right now. My tumor is a seizure risk; My body is still a little weak, but this is a huge motivation for me. I’m going to be ready to ride when I get my next clean MRI.
Another thing that keeps me motivated is music. Just listening to music I love.
Helping and Sharing
Exchanging stories with strangers (or new friends) going through similar and often much worse struggles is saddening often, yet motivational too.
What I’m Not Doing
I know there are some other possibilities for drugs (e.g., Metformin, DCA). If my oncologist isn’t gung-ho about anyhing, then I’m going to embrace my all-natural options. Although it might seem less aggressive than called for, I believe — and I think that is a big part of the battle. I don’t believe Avastin has anyting else to offer me now. I appreciate the countless prayers offered on my behalf, but I can’t settle into hospice care and rely on Big Pharma, nurses and God to carry me to the home stretch. I wrote above that we are all God and I need to manifest my destiny.
Worry — no worrying. It only brings energy to the problem, growing it.
Thank you everyone for your encouragement and support and love. Things are going well. We can raise that 14 month median survival statistic and give others hope.
MRI in mid-March, then travel to Duke for a consult.
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.*)
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.
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.
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.
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
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.
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.
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.
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.
It’s been exactly one week since my last Avastin/Irinotecan infusion. I’ve been feeling very good. I’m on the same treatment plan that I was on for the last couple months but I seem to be handling it better so far — no abdominal pain; I have energy and appetite; things are good.
I was inspired by the success of another GBM survivor (over two year survivor) and I am now following the Budwig plan (flaxseed oil and cottage cheese quark diet) more strictly. Tina’s making me healthy green smoothies daily. I’m back to not eating red meat and am avoiding the whites: sugar, rice, potatoes, bread, pasta, etc. I get lots of exercise. I continue my spiritual exploration. My attitude and mindset are nothing but positive for myself. I do worry about the state of affairs for everyone else though — the crap foods being provided to us by stores and restaurants.
Tina and I have been reading a book by Greg Anderson titled, Cancer: 50 Essential Things To Do. We are both connecting with it and I recommend it if you’re dealing with cancer.
All Hallows’ Eve
It’s just entertainment reading from here.
Last week, I was chatting with a neighborhood boy (about 6 years old) about Halloween. He commented on how scary some of the (store-bought) tombstones, (plastic) skeletons, (sheet) ghosts and (blow-up) spiders were in the neighborhood. He asked why we didn’t have a bunch of decorations up, too. I told him we don’t “decorate” for Halloween. I warned that it will be “real” at my house on Halloween and not to come by unless he wants to get scared. (He scoffed at this.)
I hand painted a sign on rotten wood to help route trick-or-treaters. My jack-o-lantern had a big flame that occasionally burned green from copper sulfate. A strobe light illuminated saws and hooks dangling in my garage. Glenn Danzig’s Black Aria provided the aural landscape. My “scary zone” was further up the driveway than the front door where Tina handed out treats. Several people stopped to look but then skipped our house to go to the neighbors’. Maybe our set up was confusing — or, maybe too questionable (i.e., super spooky).
It was good and dark when that boy came by our house and he was ahead of his father. I hid in the garage behind the saws. Before he knocked on the front door, I made some noise that caught his attention. I made some haunting monster growls and reveled in satisfaction as he ran away warning his dad that it was too scary. Success!
I’m not sure if my lesson to him will translate to appreciating creativity over the convenience of mass-production but, in a way, that was my motivation (that and having fun scaring kids).
Today I had my fourth chemo infusion. This time, Avastin was excluded. This is not good news because Avastin is the key drug that everyone has their money on as being the most effective at fighting my tumor.
Below the Belt
So the abdominal pain I blogged about previously is cleared up. Drain tube is removed. No more pain. Doctors are not clear whether I still have an appendix or whether it perforated/ruptured three weeks ago.
An MRI to see if this chemo regimen has been effective will be done in two weeks. Then we’re off to Duke to discuss options. Here’s a quick review of modern-medicine best-of-class tactics tried so far.
- Temodar — FAIL
- ICT-107 trial — FAIL
- Novocure — FAIL
- Avastin — FAIL
Shit, all the good choices are gone. Avastin MAY be reconsidered in the future. There are more clinical trials; more alternatives; MORE HOPE. I’m not concerned. At least, I don’t consciously think I’m concerned. I notice that I began erasing myself from LinkedIn — leaving Groups that are no longer relevant to me. I’m almost done creating succession plans for my freelance web and design clients. I’m not doing this because I think the end is near. Maybe I just don’t want to go back to that life or career. I have options for that when the time comes.
How am I Feeling?
Despite some bleak news above, I still feel physically, mentally and emotionally strong. The weather is fantastic. I’m dying to take my motorcycle out for a spin. The only thing stopping me is my own caution. No sense risking overdoing anything right now.
I was hyper-aware of motorcycles today though. On a walk today a bike passed by and I noticed how good it sounded as it’s deep rumble faded down the road. Same walk, I saw a young girl riding a Honda 50 that resembled the one I rode when I was 13. I vowed to revive my ’82 Shovelhead and do some Fall riding.
As much as I love cooking, I’ve noticed a decreased interest lately. Months ago a neighbor volunteered to sign us up for Food Train — a means for friends and neighbors to volunteer to drop-off a meal or some food. So I finally gave in. Here is a link for anyone interested in participating.
CT Guided Aspiration Drainage
I started my day with a gurney ride to Radiology. After downing a bottle of contrast, my food-starved, narcotic-fueled, sleep-deprived body was barraged by waves of trembling and voracious teeth chattering. Basically, reactions to being cold except they were very exaggerated. CT imaging revealed an abscess in the vicinity of my appendix. An area below my navel was numbed with topical anesthesia. I was infused with benzos to relax. I suggested they just knock me out! I really didn’t care to FEEL or remember the procedure. I did not get my way. But it was quick and mostly painless.
Two weeks ago, the oncologist assumed my GI pain was a kidney stone or urinary infection. Now, she suspects that my appendix ruptured. The goals of today’s procedure were to:
- remove fluid, thereby reducing pressure and relieving some pain;
- collect samples so that the Infectious Disease team can identify specific bacteria present as well as the proper antibiotics to combat the bacteria and remedy infections;
We need to treat infection with antibiotics to avoid, or at least post-pone surgical removal of my appendix. Avastin compromises cell health which would complicate recovering from surgery. Avastin is known to cause GI complications and is probably responsible for all this trouble.
I was released from the hospital today.
My own self evaluation of my overall wellness is entirely positive!
When unexpected complications arise, I’m reminded that October is the month for me that corresponds with the ominous 14 month death statistic. Despite a few recent hindrances, my physical, emotional, spiritual and mental well-being remain great. Plus, the tremendous outpouring of love and support for Tina and I is like a vaccination against despair. I don’t claim to be self-actualized or enlightened. I still fall prey to petty annoyances.*** But all-in-all, Everything’s Gonna Be Alright.
Too Much Information
A drain tube protrudes from my lower umbilical area and empties into a collection bag that I can strap onto my leg. Tina was instructed on how to flush the drain twice a day to keep it clean and clog-free in order to collect excess blood, pus and who-knows-what. I’m not sure how much fluid is expected to collect in this bag. It could turn out to be a good Halloween costume. Actually, it brings to mind, artist Andres Serrano!
*** some hospital experience examples, for the fun of it (and to waste more time)
#1 I understand that the statement, “How are you,” is a common and friendly greeting. But if I’m having an off day, it irritates me when hospital staff casually ask. I’m not going to retort with, “Fine! How are you?” if I am not. So I respond with, “Hello.” Or I deflect by asking them the same question. Most often, I don’t respond at all which is probably perceived as rude. I don’t know why I let this bother me. But I disappoint myself when I succumb with a fake, pleasant answer? Honestly, I’m not an advocate of political correctness but I think it would be reasonable for hospital management to suggest to employees that maybe a neutral greeting would be more appropriate when addressing their customers, the patients. Something like, “Hello” is probably fine. I know the topic doesn’t deserve this much consideration. What’s wrong with me?
#2 During my overnight stay in the hospital, I was checked on by a nurse every hour throughout the night either to change IV bags, evaluate pain status, take vitals, etc. So, it wasn’t a very restful night. When the morning shift change happens, it’s like the party gets going and the noise level cranks up. Then the new nurse comes in the room and greets me with a chipper, “Good Morning!” which sounds to me like encouragement to get up. Sorry — I’m laying in bed for two more hours. Can you keep it down!?
#3 I won’t go into a rant of the deficiencies of patient profile questionnaires, but that’s another hot button topic for me.
My third infusion of Avastin and Irinotecan went well. I felt lousy for a couple days but seem to be back to normal now.
Benefit Events Update
The two-day benefit, Kebostock, was a success — good weather; nice turnout; great music. At the end of the day, it hit me. I realized the immense effort, love and generosity put forth by organizers, sponsors, family, friends and the community. All in all, we estimate about 300 people showed up. I wish I could have spent more time visiting with everyone. Thank you!
The rest of this post is just personal or fun stuff — no relevant medical information.
A family friend graciously let Tina and I stay at their lake house. The morning of the event was so lovely that we decided to eat breakfast outside. We inadvertently locked ourselves out of the house. We had no keys and no phone — and no clothes really. We had no choice other than knocking on a neighbor’s door and explaining our situation. The neighbor turned out to be a member of the band Drop (dropatlanta.com), an Atlanta-based funky, psychedelic, improvisational jam band (think Grateful Dead). He extended every hospitality to us, clothed us in brightly colored hippy shirts and drove us to the festival. He brought along his guitar and played a set of music along-side Albert. Thanks, Craig!
Did someone really get a Kebostock tattoo?
Not someone — two people did!
I thought they were crazy but Matt and Will got tattooed prominently on their chests. I’m blown away and honored at their gesture. The coolest thing is that the tattoo artist, another good friend of mine from the 1990’s allowed me to tattoo my signature on Matt. I had never touched a tattoo gun before! I got a 20 second lesson on tattooing and was let loose. It was a lot of fun.
What happened to the Kebostock banner?
Friday night at Back Forty, there was a nice big banner hanging. Why wasn’t it displayed on Saturday?
The banner may or may not have been “stolen.”
I think credit for the idea belongs to my brother-in-law, Albert Simpson. He’s a musician who has played at other benefit events. He had the connections and know-how to get it done. When he recruited my mother, Cheryle Maudsley, to help, there was no stopping the event from becoming a success.
What will the donated money be used for?