Oncology called today. My blood platelets are back to normal. I’m all clear to continue taking my chemo pills. This is the good news we were hoping for today.
Being eager to get back on track, I took my dose without giving a thought to the anti-nausea medicine. One of the doctors (a resident) had suggested that if I wanted I could try to take the chemo without the anti-nausea, because there is a chance that I might not need it. Well, I needed it. For an hour I tried all the tricks I could to fight it off. I finally just had to give in.
In a waiting room one day, another tumor patient explained chemo nausea like this: imagine the sickest you’ve ever been… multiplied by ten. It was pretty rough. But not as bad as throwing up from having drank too much booze in college. That is, I felt fine afterwards, and the room wasn’t spinning. So, lesson learned.
Tina loves squirrels. I like squirrels. But like most Atlantans that I know who feed birds, squirrels are regarded as a nuisance. I happened to take a look outside this afternoon and see the squirrel in the photo above. (Note, some mobile devices aren’t displaying the photos.) Looks like the poor guy has a big tumor on his shoulder. I don’t know what it meant, but it struck me as something I needed to take note of.
What an auspicious day.
The good news, enumerated
- The sponsor of the clinical trial in which I wish to participate called to confirm that the apharesis was successful. That is, there were enough cells harvested for me to continue in the study. They are whipping up a batch of vaccine custom-made for me.
- Emory and Rush are now communicating and in agreement. I will likely be put back on chemo early next week.
- My radiation oncologist agrees that we made a wise choice by choosing the trial at Rush.
- Pathology gave us a slide of my tumor just in time for my visit with an Eastern medicine practitioner, Lisa, later today.
I know that much of the content below will be met with skepticism, but I’ve described it anyway for posterity and for anyone interested.
Lisa specializes in many traditional herbal and Chinese medicine treatments, including acupuncture, herbal formulas, cupping, moxibustion, tui na, and Qi Gong. Tina and I feel that Lisa has worthwhile treatments that will benefit me.
She expressed that we picked a fantastic day to begin our treatment with her. Today is the Fall Equinox. I don’t know much about what that implies, but something about new beginnings and an ideal time to plant intentions.
Lisa wants to use the tumor’s energy from the slide we got from Emory during my treatment. She will also “introduce” my body to the chemo medication. We will inform my body of what’s happening. We’ll acknowledge that the medicine is harmful, but explain that it has an important purpose — to seek out and kill bad cancer cells. Don’t fight it. Let the medicine do it’s job and focus on keeping the rest of the body strong and healthy. Of course we’re not actually talking to my body, but rather using intention and actions.
I mentioned to Lisa that there is the chance that I could receive placebo in the trial rather than the actual vaccine. She replied that this is not necessarily important — that the placebo effect is beneficial. The power of the mind to heal the body is incredible. The fact that I think I am getting something that will heal me, is arguably as good as actually getting the real thing… especially in this case, where the vaccine isn’t proven to be helpful.
Next, Lisa used an Acutron Mentor machine to test the energy levels of my chakras. My crude explanation of the primary chakras in our bodies is that they are seven energy points located from the base of the spine up to the head. One of the things this machine does is measure how well electric current moves from the front of the body to the back, through the chakras. Let’s just say that my chakras weren’t as open as they could be.
Lisa had me lie down and firmly hold the thumb and middle finger of my right hand together. She would lightly touch a spot on my body and then attempt to pull my fingers apart. Sometimes they held fast. Sometimes they came apart. Here’s the really interesting thing: Let’s say she touched my right temple, then easily pulled my fingers apart. She would then swipe her finger up in the same spot. Now my fingers held fast. And then she would swipe her finger down in the same spot and my fingers would again come apart easily. That was bizarre.
The information gathering described above allowed Lisa to decide how to treat me with needles. She had me hold in my right hand a jar containing the tumor slide and a vial of something that she did not tell us what it was and we did not ask. She put about 20 needles in me from head to toe, which didn’t hurt at all, and asked if I felt any energy movement. I didn’t feel a thing (and didn’t expect that I would). She dimmed the lights, put on some new age music and left the room for twenty minutes. Well it wasn’t too long before a felt something at one of the needle points in my right leg. It was a vibration that lasted about a half a second and repeated every second. It felt circular, like the needle was spinning although I didn’t look to see. Then I noticed a couple other sensations, one in my other leg, one at the crown of my head. Who knows, maybe we unblocked some energy channels.
When Lisa removed the needles and took the jar with the tumor in it from my hand. She felt my hand and pointed out how hot and sweaty it was. Her explanation was that it was my hand’s reaction to the toxic energy of the tumor.
That about sums up the visit. Sunday we are going to a restorative yoga class and then getting a private lesson in meditation from a good friend. I’ve got a fresh batch of wheat grass sprouted and ready to plant. Another good friend is delivering a kombucha scoby to me and I’m picking fresh shikate mushrooms off a log in my yard. I think we’ve got a good start on some alternative therapies.
Today I had my first treatment. A couple hours after gulping down my first set of chemo pills, Tina took me to Emory for my first radiation treatment. It was both no big deal and horrible at the same time. No big deal because it’s too early for me to feel any ill effects of the chemo and the radiation is also painless and only takes ten minutes. Horrible because in my head I occasionally imagined that I was feeling effects. And the radiation mask had shrunk a bit so it was extra tight. It tightened on my throat so that I could feel my pulse. I couldn’t open my right eye. It was nearly impossible to talk and they kept asking me questions. While I wasn’t really very uncomfortable, I was trapped and it seemed like a metaphor for my whole situation. Frankly, it pissed me off. When the nurse asked if I was ok, I simply harrumphed from under my whole-head muzzle. When it was over and she asked,
That wasn’t so bad, was it?”
I replied, “that depends.” I know she was just trying to be upbeat and sweet. At least I refrained from getting belligerent.
The radiation process was very sci-fi. The table I was laying on (which they inappropriately refer to as a couch) rotated. A big X-ray and a couple lasers whirred and hummed around my head as they moved into position. Green and blue lights flashed across my eyelids. Although I couldn’t feel the lasers it was clear when they were radiating me because of the ominous buzzer that sounded, warning others: DANGER, DANGER!
We finished the treatment with a quick bit of lab work. After yesterday, taking a vial of blood was a cake walk. First day of treatment — done. Only 41 days to go. Everything is running smoothly… so I thought.
What we’ve got here is a failure to communicate1
The Emory oncology nurse called to tell me to stop taking the chemo pills immediately. The lab work revealed that for some reason my blood platelet count had drastically dropped. I explained that it was probably because of the apharesis done the day before at Rush. She said that they were not aware that Rush was going to do this and that the ballgame has just changed. Luckily my cell count is still in the safe range, but if I start to spit up blood or blood starts coming out of nose, eyes, (anywhere) — call them immediately.
Well, what do you know — the Emory doctors are finally ready to talk to the Rush doctors. Hopefully they will see eye-to-eye and begin working together. I titled this post “Regression” because this hiccup is somewhat of a step back, a delay that could have been avoided. We (that is, Tina) really had to fight hard to get me into this clinical trial. We have a good feeling about it. I understand that Emory may not be ecstatic that we are working with Rush. Really, this is a business, with all the characteristics — profit margins, competition, ego, profit margins, prestige, and profit margins. Despite my cynical tone, I really do have faith that all my doctors are excellent professionals and good-hearted people with my health as their top priority. I’m confident they will work it out.
Tomorrow I go back to the space station for radiation, just no chemo.
- Quote from Cool Hand Luke, 1967
Today we went to Rush Medical Center for my apharesis. I got comfortable on a hospital bed and made ready to sit there for the next two to three hours. They stuck IVs in both my arms and told me not to move them until the process was over. Blood was pumped out of my left arm, mixed with some anti-coagulant and sent into a centrifuge where the white blood cells were isolated and collected. The blood was then sent back into my right arm. This process isn’t painful but it is a tiring and you have to rely on someone else to scratch your nose.
After an hour and a half of this, my nurse gave me the news that the quantity of the specific type of cells they are collecting from me is in the normal range — but on the low side. This meant that instead of being done in another half hour, they calculated it would take a total of five hours and 20 minutes to get all they need. Yikes.
At any time during the procedure there was about a half a pint of blood out of my body. When it was finally done, all the blood in my body had been cycled out of me three times. They harvested about 300 milliliters of cells. I walked like a fawn for about 15 minutes afterwards but otherwise felt fine. That was my only shot at success. If the study sponsor doesn’t get enough of the specific cells they are looking for, then I’m kicked out of this trial.
I’d like to take a paragraph to express my love and appreciation to my wife, Tina. Not only did she sit there with me the entire time and scratch my nose. She did everything for me: fed me lunch, put headphones on me, put on music, adjusted my pillow, and when my bladder got too full to hold it anymore — yes, she did it all.
We are back in Atlanta now. Tomorrow I begin radiation and chemo.
Today we met the Rush oncology team, led by doctor Aiken. They took a little blood for testing, did an EKG, put me through the standard neurological exam (hop on one foot, touch my finger to my nose then the doctors finger, follow the light with my eyes, reflexes, etc.). By the way, I pass this test every time with flying colors. Then they explained the clinical trial to us and fielded questions. He began with the bad. We’ve always known there is a 33% chance I can get placebo. There are a few milestones along the way where I could be disqualified, the first of which is the apharesis on Monday. We have one shot to get all the white blood cells required for the trial. Apparently the process failed for a couple of other patients. They were both small women. The doctor thinks I’m “stout” enough that it shouldn’t be a problem. If it’s not successful, there just isn’t time to do another one. Radiation and chemo typically need to happen between week four and six after surgery and we are almost at week seven.
All in all it was a good visit. The staff was incredibly accommodating and helpful. The team was optimistic and straight-shooting (see Heavy Stuff below, or skip it if you’re not comfortable with death talk).
More good news: The apharesis team said that I should load up on protein and calcium for Mondays procedure. They said I was all clear to eat just about anything I wanted and a glass of red wine wouldn’t be a bad idea either. This is great news considering we had reservations at Alinea tonight.
We had dinner tonight at Alinea — an amazing restaurant. The architecture, design, flavors, ingredients, creativity, presentation, staff — everything was phenomenal. Usually you need to make reservations months in advance. We got on the cancellation list and luckily someone must have cancelled. But Tina had written a compelling email to the restaurant and I think this played a part in our getting in. You see, the head chef and partner, Grant Achatz, had a stage 4 cancer of the mouth, from which he is fully recovered. It’s an inspiring story.
The meal was 18 courses and lasted three and a half hours. Eighteen courses of the most amazing, complex, creative dishes I’ve ever seen. Tina got the wine pairing and I got to sip on them without having to be covert. I just can’t describe how enjoyable the entire experience was.
At the end of the meal I braced myself for the (justifiably) steep check when the waiter informed us that the bill had been taken care of. All he would tell us is that someone called to take care of it and wanted to remain anonymous. We were floored. We can only say thank you here and hope the benefactor knows how much we appreciate the amazingly generous gesture.
I’ve been wondering how this cancer actually kills someone. So I asked Dr. Aiken and he explained. Typically, a GBM is discovered and successfully removed (gross total resection). Patients are monitored regularly. If there is a recurrence, can’t they just remove it again? Well, the answer is yes but here’s the deal: sometimes these tumors occur in an ideal location (as mine did). They are easy to access and not in critical parts of the brain. They say a huge chunk of your right temporal lobe could be removed and you’d be just fine. But the tumor could pop up in a more critical area and somewhere that is difficult to access. Removal can leave a patient in various states of… disability. It becomes a quality of life issue then. So we really have to make some tough decisions about where the line is that separates worth living or not. Needless to say this was a very difficult conversation for Tina to listen to. For me, not so much. Maybe that’s denial at work.
My poisons have arrived.
Some of the more common side effects are listed below. The list of “serious” side effects is too long to type and frankly too disgusting or horrible to share here.
- Back pain
- Dry skin
- Hair loss
- Joint pain
- Loss of appetite
- Stomach pain
- Mouth sores
- Muscle aches
- Taste changes
- Trouble sleeping
- Weight gain
Looks like I’m ready to get this party started.
Today, Dr. Mikell (my Emory radiation oncologist) informed me that the results of the MGMT gene methylation analysis of my tumor came in. I intended to provide some explanation of the MGMT gene and methylation but it’s way too complicated to bother. The important thing to know is that the medical community has accepted that the MGMT promoter methylation status in tumor tissues can be used as a predictor of “survival advantage” when using temozolomide (chemo) with radiation, which is exactly our treatment plan.
My results are unmethylated.
Glioblastoma Multiforme (GBM) patients with an unmethylated MGMT gene promoter are generally considered to have a poorer prognosis when undergoing standard treatment.1
Despite this disappointing news, Dr. Mikell stressed that this is just one factor and we should not let it discourage us. We still have the advantage of vigor.
Still it begs the question, if we expect temozolomide to be minimally effective for me, isn’t there something more promising we can do? That’s why I am participating in the clinical trial at Rush but that’s a big gamble as well.
I spoke with a practitioner of traditional Chinese medicine today too. She recommends acupuncture and meditation during my treatment to keep my system balanced and harmonized. I’m going to try to evict all traces of this cancer from my body through sheer intention.
I intend on using nutrition to stay healthy — eating lots of living foods (e.g., sprouts) and enzymes. I’ll be juicing and fermenting. I sprouted a bunch of winter wheat berries a couple days ago. They are now planted and wheat grass is beginning to grow. In about a week I’ll have about $40 worth of wheat grass that only cost me about 50 cents.
I have a lot of friends and family who tell me they pray for me. While I still consider myself agnostic, possibly even atheist, I am very grateful to have people in my corner that are willing to devote the time and energy to my healing. I hope my lack of faith doesn’t discourage any one. I believe positive intention and good vibes are legitimate forces of healing.
There is a sea of information out there to sort through. Turmeric, hemp oil, vitamin K — doctors won’t acknowledge that these things have any value in fighting cancer but there are some strong testimonials and evidence online that say they do. It’s a daunting task trying to figure all this out.
I’ve officially met the criteria for a clinical trial being conducted at Rush University Medical Center in Chicago. This is good news. It is a Phase II trial which was named as one of the 100 Great Investigational Drugs for 2011 by R&D Directions Magazine.
“We are excited with the early promise ICT-107 has demonstrated in extending both progression-free and overall survival in patients with GBM, with no serious adverse events reported to date,” said Manish Singh, Ph.D. President and CEO.
Tina and I will go to Chicago next week for lab work and apharesis (extracting cells from my blood). Then we can return to Atlanta and start radiation and chemo. In the meantime, a vaccine will be made from my cells and some experimental stuff. That will get injected into me. Actually, there’s a 33% chance that I’ll be injected with placebo. Then they monitor how much time passes before the cancer returns.
It’s still a gamble, but better than betting on nothing.
In past years, if you told me I was as likely as anyone else to develop cancer, I wouldn’t have believed it. Certainly if you told me that I could improve my chances of NOT getting cancer by: cutting back on the amount of alcohol I drank; increasing my physical activity; eating less meat and foods that raised my blood sugar; consuming specific vegetables, fruit, herbs, spices, and teas; and buying organic — I simply would not have cared. I was enjoying the amazing variety of craft beers and small batch bourbons available now. I was devoting lots of time to cooking extravagant, rich foods. And I was having a good time
Although I never gave it much thought, I suspect I felt that I just wasn’t going to get cancer, no matter what I did. I have avoided soft drinks and fast food for the most part for years and gave up smoking years ago because these seemed like healthy enough choices.
And now I have cancer (a pretty darn mean one, too). I’m not saying it’s attributable to drinking, meat-eating, partying, cell phone usage, paint fumes, pesticides on my non-organic vegetables, working at a computer every day, or breathing exhaust fumes riding my motorcycle.
I’ve just watched a documentary that was very compelling to me. It is called Anti Cancer with Dr. David Servan-Schreiber. It’s filmed more like an infomercial, but don’t let that put you off. I am recommending that my friends and family, everyone really, watch it. We found it at the library.
While there is a lot of information that is immediately relevant to cancer patients such as the impact of nutrition, activity and social support on recovery, it shows how cancer rates have increased since the 1940s and provides reasons why. The studies presented in the film are very interesting. We’re all susceptible to cancer and these days even more so. But there are behaviors that everyone can change to proactively improve the odds of avoiding cancer.
I get the impression that western medical doctors aren’t really onboard with giving much credence to food having a profound affect on cancer. They are focused more on drugs and procedures. Corporations and the government don’t seem to put much stock in it either.
All I know is that it sucks to think that you could have a lot shorter time to live than you once thought. Right now, I feel great. I’m having a hard time believing that anything is really wrong with me because I feel so good. In fact, I’m ready for a nice 18-year single malt and a long ride on my Electra Glide (maybe not in that order). But they tell me that this cancer is so malignant that it’s coming back to kill me — soonish — so we will be starting radiation and chemo soon. I expect the effects of that treatment to make it sink in that I’m not 100%. And since I look forward to many, many, many years of good times ahead of me, I’m really embracing everything I can do regarding nutrition, exercise, attitude, friends, peer support, acupuncture, yoga, meditation and anything else that can help me beat cancer.
I think watching this film is the first time I got kind of emotional during this whole ordeal because it occurred to me that lots of the people who are showing me love right now are people that I love in return. I hate to think that cancer can (and likely will) affect someone else I love. Cancer killed my father. It has affected several other people close to me. But it wasn’t until it WAS me that it really hit home. So I guess I’m suggesting to my friends (in fact, everyone), consider that maybe some life changes are worth considering. Why not postpone dealing with your own mortality till you’re… old.
Here I am getting fitted with a radiology mask. It will hold my head securely in place and ensure that radiation beams are delivered precisely. I was also instructed on taking the oral chemo treatment, Temodar.
We are moving forward with the Standard of Care treatment (radiation and chemo). Emory currently has one Phase II clinical trial available to me — RTOG 0837. It uses a drug called Cediranib which has a pretty nasty list of possible side effects. We are not willing to travel that path right now.
Tina, in her tireless efforts, found another Phase II clinical trial being offered by Rush University in Chicago called ICT-107. This study has some encouraging write-ups and basically no side effects. Rather than testing an experimental drug, it is testing immunotherapy — creating a vaccine from my own white blood cells. I had blood work taken today to see if I qualify for the study.