In a recent previous post I reported that doctors told us I may have weeks to live. So I’m reporting now that I’m still alive and kicking. I feel well. We believe the ketogenic diet is going well and helping. Headaches have diminished and I have decreased my Dexamethasone, steroid dosage by half. I have good energy. I am falling less. Walking about has gotten better.
Blood glucose and ketone levels seem to be in ranges where we would like them to be. In fact, I believe that my body is going through ketosis which hopefully will shrink my brain tumor.
We finally got a visit from a physical therapist to explain how to use some of the equipment, i.e., walker and cane, and she also gave me exercises.
I finally got a batch of Phoenix Tears, the oil from the hemp plant. There is much evidence that cannabis has great medicinal and healing value.
I still have a bit of the chemo Lomustine in me which isn’t enough to count as a treatment. So, my current treatment is the ketogenic diet and now hemp oil. If we actually get tumor reduction, we won’t know what treatment to credit, but I guess that will be okay.
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.
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.
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.
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
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.
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.
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.
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
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.
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.
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.
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.
Dazed and Infused
Tina and I traveled to North Carolina and back yesterday for my appointment at Duke. They told us that the MRI shows that the tumor has shrunk by about 25%. This is great news.
I say I’m dazed because I have a lot of options from which to choose. In addition to the necessary evil (i.e., toxic chemo) I plan to pursue holistic strategies more diligently going forward. I just have to be careful about complementary and alternative medicines because they can be so good for the body on a cellular level that they could impede the chemo and help the cancer thrive. I just don’t want my treatment to be all poison. Unfortunately, no one can tell me with certainty what strategy is best. There are plenty of varying opinions out there. I have to go with my gut. (Since my appendix ruptured, maybe I should say, “go with my heart.”)
I am continuing with the Avastin and Irinotecan infusions. Since they seem to have done some good, it’s not unreasonable to assume (or hope) that they will continue to help.
Last weekend Tina and I had a yard sale and before getting rid of some old movies, we watched Phenomenon (1996, with John Travolta, Kyra Sedgwick, Forrest Whitaker, Robert Duvall). I do not have telekinesis or savant brilliance, but the movie definitely struck a chord. Might be worth a watch if you haven’t seen it.
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.
All day Monday, I was couch- and bed-bound from severe pain in my lower right abdomen — right where my appendix is (or should be). My body temperature teetered around 99-101 degrees. Luckily I had some Hydrocodone left over from my craniotomy and it helped me make it through the night. This is the same pain feeling that happened two weeks ago after the second infusion. Last time we just made assumptions about it being a urinary infection. I took antibiotics, but the blood culture did not confirm an infection, so we assumed it was a kidney stone and that I passed it. I HAVE had a stone a long time ago and the pain was really that bad. It was at least three days of agony.
So, today, in anticipation of another painful episode, Tina took me to the doctor’s office for routine blood work. It was decided that I should get a CT scan to determine what’s going on. The CT scan was not very useful. It showed fluid — that’s it. In fact, it was not possible to even make out the appendix.
So, I was admitted to the hospital this evening. I tried to send Tina home to get some rest, but of course she refuses. It’s the couch for her tonight.
Tomorrow, I will get a CT-guided aspiration/drainage. It’s been a long, rough day, but at least I’m still here to talk about it.
Are you in pain?
Some GOALS were written on the whiteboard of my hospital room. So, what is the nurse’s number one priority?
Pain level < 10
That is, to keep my pain level less than a 10* (see chart)
Take a look at their chart. I think it could use an overhaul. The expressions of the levels are horribly inaccurate in my opinion. Think about “severe pain” (#6) and take a look at that face. This guy looks despondent at best. Worst pain imaginable (#10) looks like a tween going through his first heart break. One’s first pubescent break-up could SEEM like the worst pain imaginable, but come on. This face does not represent excruciating physical pain.
So I asked the nurse about this goal. She asked what pain level I would like to be medicated for. Really? Does anyone answer something other than NO PAIN (#0)?
My pain is now under control. Hopefully tomorrow, we will be able to figure out what’s wrong with me.
I’m writing this update from the doctor’s office, while undergoing my second infusion of chemo.
About nine days into my first round of chemo, two weeks ago, I began having some lower abdominal pain. Pain and discomfort steadily increased over the next several days. I barely got any sleep the past three nights because of the pain and getting up frequently to use the toilet (or at least TRY to). I thought it may have been an expected side effect — constipation. But this morning at my doctor’s appointment, a urine sample revealed I have a urinary infection. That should be easily cleared up with antibiotics.
So all in all, so far, so good. Unfortunately I won’t get an MRI until six weeks from now, which is to say, we have to wait to know whether the chemo is effective or not.