Time May Be Running Short
“Angst in Red” — A painting I did in college, early 90’s
It turns out that maybe my last post prematurely announced that I’m doing well. Reconsidering the MRI scan and growth of the tumor, I understand now that doctors think I could have a matter of weeks to live. It’s probably time to call in hospice. That sounds pretty bleak. I do plan to move forward with this ketogenic diet. We hope that it will restoe some vitality, mental clarity and help control seizures, symptoms and headaches
I have known for a long time that my two to five year survival odds were low just by having this cancer, but to hear that I could be so close to expiration could be quite a shock, if I believed it. Similar to when I heard my first diagnosis, it’s a little difficult to believe that Death may be lurking so near.
April 2013 MRI Results
Recently, I’ve had more frequent headaches in the morning & other symptoms, so we moved my MRI from mid-May to yesterday.
Results are in:
There is no new swelling of the brain. The tumor has increased slightly in size — nothing unexpected or concerning, really. In a way, not bad news. We will likely discontinue chemotherapy. We are going to move forward with the Ketogenic diet hoping that it will help reduce tumor size. My oncologists don’t expect this to happen, but we are encouraged by studies and testimonials we have investigated. Here’s a video for anyone interested in more info:
Ken, Lynne and Sandy
Dining with Chefs, Loosening Restrictions
Over the last year or so, I have become friends with my local butcher/fish monger, Lynne Sawicki, owner of Sawicki’s Meat Seafood and More in Decatur, GA, when I redesigned her website (http://sawickisfoods.com/). She offered to cook for Tina and I in our home and we took advantage of that offer last week. We decided that we could loosen the self-imposed ban on meat and we ate lamb and some yummy desserts, not worrying about sugar. I’m back to avoiding sugar, but the ketogenic diet will recommend that I do eat meat and fats and oils. Lynne has worked in some of the best kitchens in Atlanta, including Partner’s, Indigo, Alon’s, The Flying Biscuit, Nava, Floataway, and Bacchanalia. It was a fantastic meal and evening.
Meal Train
The Meal Train has been a very helpful resource for us. Since I’m the family cook, when friends and neighbors sign up to bring us meals, it takes a lot of pressure off Tina and I worrying about what’s for dinner. Since I am Sawicki’s web developer, I have to take this opportuniy to promote them and their excllent Prepared Meals To Go. More information here on her site: http://sawickisfoods.com/prepared-foods/http://sawickisfoods.com/prepared-foods/.
Too Much Information / Full Disclosure/Too much information / No Time for Embarrassment
Since I’m sharing my story, I may as well share it all without reservations in case it’s helpful information to others. Rushing to make it to the toilet last week, I was unable to make it and crapped my pants. Not a pleasant story to share and we don’t think it was specifically related to my tumor but I suppose these things can happen. The MRI revealed mild ventriculomegaly, slightly increased from the prior scan. This can cause incontinence, abnormal gait and dementia. This pesky tumor is becoming a nuisance.
Almost daily I have bouts of weakness and shaking where I need to sit or lie down to avoid falling. The steroids make my muscles weak. These are quite scary for Tina. It is difficult and tiring for her to move me to a safe place to land. I had an episode tonight which she thinks was a seizure, which maybe it was, because I was unresponsive and shaking while lying down after trying to go for a walk, but I tend to not want to admit that I may be having seizures.
The Foulness
“The Foulness is what I have termed an unpleasant taste/smell sensation that I experience daily. It’s an unpleasant, metallic taste/smell. When taking chemo, a common side-effect is that taste may be affected. This Foulness of which I speak is not when I eat something. It appears almost anytime. It could be triggered during a walk or anytime. It’s very unpleasant.
My blood counts are good. My spirits are high. My support network is incredibly helpful and uplifting. I can’t complain too much.
Next Steps
I will begin the ketogenic diet soon. I may have the option to receive compassionate use of CDX-110, which is a drug in clinical trials. I would not be part of the clinical trial, but may be approved for compassionate use. This is a drug that we have had our eye on for quite a while.
Spring Update
It is mid-April and the weather is beautiful here in Atlanta, Georgia (as long as pollen everywhere doesn’t disagree with you.
My previous dose of chemo (Lomustine) was about three weeks ago, which is the time period where we saw my blood levels dropped last month and I had to have a platelet transfusion. My numbers seem to be holding pretty well this time. There were some slight drops, but nothing concerning and platelets are fine.
Side Effects and Challenges
I have occasional headaches and pressure in my head which suggest swelling in the brain. To remedy this, I increase my dosage of steroids. The problem with this solution is that steroids have a whole set of unpleasant side-effects, including:
- muscle weakness. Tina and I take several walks daily, but weak thigh and calf muscles make these walks quite a chore. (No one said recovery and acheeiving good health was going to be easy, so I carry on and am glad we have pleasant nature walks near the house.
- voracious appetite. The steroids make me want to eat a LOT. Self-restraint is tough. I over-eat. My weight is fine, but I see how it could get out of control. At least we are eating good food. I often repeat Michael Pollan’s quote to myself, “Eat food, not too much, mostly plants.”
- Blackouts. I’ve had some bouts of feeling unsteady, almost like I’m going to black out. We’re fairly certain these are not seizures. I am conscious of what is going on and know I just need to sit down for a few minutes to recover. Tina can see these episodes coming on and it’s a little scary for her. As long as I can communicate that I’m ok, she is able to not panic and help steady me.
Fundraising
Tina and I were asked to participate in a video/photo shoot for a fundraising event for the Atlanta Cancer Care Foundation which provides some financial assistance for patients like me. The event is sponsored by the Legal Function of The Coca-Cola Company. So, Tina and I shared some of our experiences and these video clips may be used in a video at the fund-raising gala at the World of Coca-Cola.
Next Steps
I’ll have another MRI in mid-May.
I feel as though things are going very well.
Good News, Yet Conflicted
Duke called to inform me that my MRI reveals that the tumor is stable. It appears to have not grown. This was expected to be the best outcome possible. Of course, tumor reduction would have been better news but that was never expected for this particular chemo, Lomustine, for me.
This is very good news! Despite my diligent adherence to avoiding sugar and alcohol, we decided it was an occassion to celebrate and raise a glass of wine.
The recommendation is to continue taking this chemo, which really just means taking a second dose for now. One dose lasts six weeks. Side effects have been fairly minimal and tolerable, including:
- fatigue — I’ve been zapped of energy, but this could be attributable to the steroids I take (to control brain swelling);
- low blood counts — I’ll have to continue getting frequent blood tests. I had to have a platelet transfusion during my first dose. This is not a big deal though.
So what is there to be conflicted about?
I spent the last month doing intensive research and planning for a natural healing plan (my Plan B). If the MRI revealed that I should not continue this chemo, there really isn’t another one waiting for me to try. I have pieced together an intensive treatment regimen including, diet, nutrition, juicing, supplements, meditation, yoga, kinesiology, accupuncture, ayurvedic healing, pranic healing, and a variety of other holistic treatments.
The idea behind my plan is that the human body is capable of amazing self-repair. Nurture the body, mind and spirit to optimal condition, and the body can effectively fight disease and cancer, actually destroying tumors. This sounds too good to be true. Otherwise, everyone would be healthy, right? Reading about alternative and natural healing, it’s not difficult to be convinced that many industries in our society rely on Americans to continue eating poorly, watch lots of TV, drink soda and beer, and get fat and sick. There is lots of money to be made from the unhealthy.
I was ready to forego chemo for my custom-tailored plan because I believe: toxic chemotherapy often kills patients. I believe I’ve got the right plan as well as the tenacity, determination, passion, faith and luck to be one of the ones who survive following a natural healing plan. Tina, however, knows that I finally found something that is working for me, so carry on is the only sensible course of action.
I suppose that I have to accept that the chemo is probably responsible for stopping my tumor growth. I agree it makes sense to stick with it.
I will likely pursue my plan anyway while on the chemo although my medical doctors will likely discourage me from some pieces of it namely certain supplements, concerned that they may affect the efficacy of the chemo.
All the pictures in this post were taken on our daily walks in the woods.
Good Blood
Good news — my blood platelet count was greatly improved yesterday. I hope this means I’m out of the woods as far as needing transfusions.
Kebostock Photo Slideshow
We had a fund raising event in September 2012 which was a music fest type of thing. We called it Kebostock — a play on Woodstock and a nickname many know me by — Kebo. A good friend from college put together this photo slideshow of the occasion:
Seeing Clearly
My vision has always been great. I’ve never needed glasses. But over the past several months, I’ve had difficulty reading small text. So I picked up a cheap pair of drug-store reading glasses that seemed to fix the issue. In the last couple weeks though, my eyes have felt strain and caused headaches. This has been troubling because the tumor could be interfering with optic nerves.
Tina took me to an Optometrist for a proper exam. Everything seemed to look pretty good. The conclusion is that I’m just getting old and this is typical for a man in his forty’s. I really hope so — I know of people whose tumors do affect vision to the point of blindness.
Hope, Love and Friends
I want to encourage the many other GBM patients and caregivers out there to stay strong. I’m sending out healing thoughts on your behalf.
Cindy, Kat and Joy — Tina and I send love your way. These are difficult times, but with the love, support and prayers of friends, we can carry on, heal and experience joy.
Thank you to all our friends who help us daily — you make this process much easier to deal with. We love you all.
Getting Warmed Up
Turn of the Season
This is very important to me. We finally got a warm sunny day and it lifted my spirits. Tina and I went for our daily two-mile walk through Deepdene Park without me complaining about the cold. Winter still hasn’t gone into hibernation yet, but I feel Spring is going to kick him out of here very soon.
Latest Blood Results
My body seems to be generating platelets now. My numbers were high enough yesterday so that I did not require another transfusion. Other blood numbers hover kind of low from the chemo, but nothing to worry about.
Platelet Donation
Several people asked about donating platelets on my behalf. I asked about this and apparently it’s an antiquated idea. Certainly if you have healthy blood to donate, someone, someday could benefit from your donating so I encourage that. But as far as doing it for me, it’s not practical. As you are donating blood if you want it to be meaningful to you that it’s for me you’d have to handle it like Dallas (Matt Dillon) in the movie, The Outsiders: “Let’s do it for Kebo!”
Can’t Forget Fun
I received a donation this week from someone I don’t know with the “stipulation” that I had to spend it on something fun. What a great gesture. Thank you. Having fun needs to be part of my recovery and treatment plan. I’m certain I can figure something out!
Discipline and Breaking the “Rules”
We had a gift certificate to use for a nice dinner out and used it last night. It came with a cocktail or glass of wine. Although I think it’s in my best interest to avoid drinking alcohol, I went ahead and had a glass of pinot noir with the justification that resveratrol is an antioxidant and even recommended for cancer by some sources. Tina ordered the salmon so I got the duck breast (I’m one of those that can’t order the same dish even though it was a healthier choice). And for dessert, chocolate truffle cake with vanilla ice cream. Normally I would never have all that sugar. It’s pretty easy to think, one meal of decadence isn’t going to kill me and I did enjoy it thoroughly. It felt like we were on a normal date like years ago. But going forward, I think I have to be more diligent about my self-imposed restrictions.
For the last week or so I have been been working on building a custom protocol for myself regarding nutrition. Rather than follow existing protocols like Budwig (flax and cottage cheese) or Gerson (juicing), it will incorporate concepts from these programs as well as some things I feel are right for me to contribute to Natural Healing. I’m excited to share my ideas, probably after my next MRI.
“Avoid Knives and Mosh Pits”
“Avoid knives and mosh pits,” was the advice of my oncologist’s nurse practitioner last week when she informed me that my blood platelet count was dropping very low. Platelets prevent bleeding.
Saturday night I did have a lot of nose bleeds. I was tested again on Sunday and the platelets had dropped further. After today’s re-check I was taken immediately for a transfusion.
Decreased platelet count is an expected effect of chemo, so this is no big surprise. It is my first experience with it though.
The transfusion of donated platelets should last about three days at which point I will be tested again. Hopefully my bone marrow will start generating platelets again so that I don’t need another transfusion. Luckily, the transfusion is quick and relatively painless.
Other symptoms
I’m having some minor vision issues. I noticed while helping Tina list items to sell on eBay (mostly women’s clothes).
I don’t have significant pressure or headaches but occasionally have some curious sensations in my head.
I don’t fixate on symptoms or the tumor because I believe that “where thoughts go energy flows.” I don’t want to empower anything negative.
My muscles are weak which can also be attributed to chemo and steroids. Also, I have gotten away from a regular yoga practice. We walk quite a bit every day. Spring is almost here. By then, I expect to get back to some physical training, including yoga.
Next MRI
My next MRI is in two weeks. Then, we’ll go consult with Duke again.
Other options
Although Duke said we were running out of options, that is not entirely true. The NIH contacted us to report that I do qualify for their super aggressive immunotherapy study.
While an aggressive, progressive or risky treatment might seem a reasonable plan of action for where I’m at now, I’m inclined to choose a natruopathic approach. That is, nourish my body, mind and energy so that it is in an optimal state to fight the tumor itself. This probably sounds ridiculous to some people and it may very well be, but their are no clear choices. This is tough.
Fluffy Face
Steroids swelling my face.
It has been about three weeks since I took my first dose of Lomustine (CeeNU). Today’s blood tests reveal that my platelets have dropped (from 139) to 48.
I will re-test in two days. If my platelet production doesn’t pick up and numbers drop too low, I will get a transfusion.
I am decreasing my steroid (Dexamethasone) dose today. I’ve been experiencing many unpleasant side effects from it. My face is swollen (which isn’t unpleasant, just an explanation of the title of this post. My doctor called me Fluffy Face.
Increased appetite is actually a good side-effect. I’ve gained some needed weight. Now I just need to get back to exercise and yoga to recover my atrophied muscles.
Retraction
In the previous post, I recommended watching the film, Forks Over Knives and declared I was cutting out meat again. I decided to look further into the validity of the claims in the film and now think that the film was biased and data distorted. Meat is not going to kill me. I’ll probably keep it to a minimum though. (Here is one source for my change of mind.)
Healing Everywhere
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- Kikka and Ken
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- Kali comforting Tina
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- Kali healing Ken
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- Dolphins swam with us and a manatee made an appearance too.
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- Dinner at Nikki & Chad’s house in Sebastian
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- Enjoying warm, Florida weather with Nikki, Kikka & Chad
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- Fireside with Kali
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- Another great dinner at Nikki and Chad’s house
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- Taking in sea and sunshine at West Palm Beach
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.)
Nutrition
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.
Supplements
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:
- B-1
- Alpha-lipoic Acid
- Vitamin C
- Curcumin
- L-glutamine
- Ortho Biotic
- Methyl B-12
- CoQ-10
- Astragalus
- Stamets 7 (mushroom extracts)
- Fish oil
Chemo/Prescription
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.
Passions
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.
Next Steps
MRI in mid-March, then travel to Duke for a consult.
Light, love and blessings,
Ken
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.
And painting
I’ve been working on a series of paintings/drawings of my father’s Hawk tattoo.
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 