The Beginning of the Next Phase
11/1/11
I began the day with a visit to my acupuncturist. We decided to do some energy work to help harmonize and align my chakras. (Or something like that — this is all new to me.) It was amazing. I’m experiencing things that I once would not have believed. I think I made a good decision adding this to my treatment regimen.
Then we flew to Chicago to begin the ICT-107 clinical trial. A four hour flight delay prevented us from getting there early enough to enjoy the evening, but at least we made it.
11/2/11
We had an early morning appointment at Rush. This visit involved taking a lot of blood for various tests to ensure that I still qualify to participate. If so, I’ll travel to Chicago weekly this month for vaccine injections. The first MRI will be on November 21. This will be the first check to see how things are going since my surgery. Doctors do not expect to see any tumor regrowth this early.
I feel good about participating in this study but I occasionally get angry about being in this situation. As we were leaving the hospital, I shared an elevator with a woman with no legs. She maneuvered her wheelchair with agility using prosthetic hands on arms that ended below the elbow (and did it with a smile). It was an attitude adjustment for me. Although my condition is still considered terminal, I realized that many, many people suffer worse and endure more than I.
We flew back to Atlanta.
11/3/11
We met with the oncology team at Emory today. At the end of November, I will begin taking a double dose of chemo five days a month for the next 12 months.
We then attended a brain tumor support group. Today there were about six other people with stage 4 GBMs. We learned that the Southeast has a higher number of brain tumors than other parts of the country. The National Cancer Institute is doing an epidemiological study to determine if diet, exercise or genetics play a role. I qualify for the study and am a prime candidate because I have a brother who does not have brain cancer. They would want him to participate too. Basically, you confidentially answer a bunch of lifestyle questions and send in some toenail clippings and saliva. I have to admit that I’ve never been extremely philanthropic, but this seems like a responsibility.
Radiation Graduation
Today was my final day of radiation. I also have a one month reprieve from chemotherapy. I feel very good in all respects. This is all good news. I’ve graduated from Radiation-101.
Veg/fruit juice with wheat grass juice, poured Black-and-Tan style
On a light note, it’s very appropriate that today is Halloween. The spooky part of my story is that I feel myself going through a transformation not unlike someone who is bitten by a werewolf or vampire. Internal, external and mental changes are happening.
For instance, I broke my rules and ate a bit of beef — a juicy t-bone steak. My taste buds recognized the familiar flavor of tasty fat. The rest of my system however let me know that it didn’t appreciate this unauthorized activity. I could only eat three bites. I had Brussels sprouts sauteed with some delicious apple wood smoked bacon, dry rubbed with maple and molasses. I found myself pushing the greasy bits of meat to the side.
Beef course from the chef's table dinner at No. 246 in Decatur, GA. The fish and veggie courses were incredible.
I used to LOVE eating meat! Now I can discern the difference between first and second cuttings of wheat grass juice. What is happening to me!?
I guess I’m getting healthy. I don’t even crave a cold beer. And, the love handles I’ve been working on for years are quickly disappearing.
The next episode
We leave for Chicago tomorrow (Nov. 1) to begin the ICT-107 clinical trial. While medications and radiation seem to have done me no harm so far, I continue to question whether experimenting with drugs is the right path. Could the answer to this cancer simply be nutrition and lifestyle. There are many people who think so. But they don’t have the money, power and influence that pharmaceutical companies have. Guess I’ll just continue to do it all for now.
My first MRI will be on November 21st. My suspense is starting to build.
Happy Halloween.
Week 6 – Nearing a Milestone
I am in my final week of irradiation and chemotherapy. My last treatment is on Halloween. Then we head to Chicago to start the next part of the journey. I still feel good. Medically, there is nothing interesting or new to report. I have some hair loss, minor fatigue, minimal weight loss and weakness in my knees, probably from deconditioning.
Change of Plans
I was a little premature announcing that we would be working with Angel Flight for travel to Chicago. Volunteer pilots flying small planes have restrictions and complexities that prevent it from being a viable option for us. Too many pieces would have to fall into place for each leg of the trip.
They did suggest another option for us – Corporate Angel Network (CAN). CAN is an organization that helps arrange transport via corporations who use larger, private jets. Atlanta to Chicago is a pretty common route for companies to make business trips so we have pretty good chances of being able to tag along from time to time. It should save a little money and help avoid exposure to a cabin full of germ-carriers. We’ll see what happens.
Thank you
Friends and family continue to reach out to me for all kinds of support. I appreciate it.
The Photo
The photo for this post is of me lying with my head on my cat, Mila. It looks like my radiation has lit up her eyes.
Redesigned
First of all, I’ve tweaked the blog site a bit. The goal is to make it easier for people to get to the info they are after, whether it’s to hear my personal rantings or see what the progress of treatments is. There’s a home page to help new users understand why I am doing a blog. It’s still a work in progress so will probably change a lot in the coming weeks. With some luck, I’ll be fiddling with it still in 20 years 🙂
Week four
I’m finishing up week four of radiation and chemo. Everything is still going well so this update will be short. New side effects include hair loss, just on the right side near my ear where they are zapping me. Fatigue has actually improved – maybe the result of my revised diet. My attitude is pretty good. This might be because I’m continually amazed at the kindness and helpfulness of my large support network.
Flying with Angels
My last day of radiation and chemo is Halloween. My first appointment in Chicago is November 2. I have to go there one day a week for five weeks straight. Thanks to the suggestions of a couple people, some of the burden of expenses has been alleviated. I’ve been approved to be transported by the amazing volunteers of Angel Flight. Angel Flight provides free air transportation for people that have a medical need that can’t be filled in their local area. Not only does this save us air fare, we will not have to pay for a hotel because we fly back the same day. So food costs are lowered also. But most importantly… no Atlanta Harsfield-Jackson airport security checks or cabins full of other passengers and their germs!
Since these are small airplanes, inclement weather could delay our flights. This is a concern because to remain qualified for the trial, I must attend all of my scheduled appointments. The injections must be administered within limited windows of time. But there are lots of flights from ATL to CHI via other carriers so we could probably make it on a last-minute, stand-by.
Nausea
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.
The squirrel
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.
Auspicious
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.
Disclaimer
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.
Fall Equinox
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.
Chakras
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.
Muscle Testing
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.
Accupuncture
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.
Regression
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.
Refences
- Quote from Cool Hand Luke, 1967
Apharesis
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.
My partner
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.
Chicago
We arrived in Chicago Thursday afternoon (9/15), checked into our hotel, and got some rest for our Friday appointment at Rush University Medical Center.
Rush
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.
Alinea
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.
Heavy stuff
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.
Drugs!
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.
- Constipation
- Diarrhea
- Dizziness
- Drowsiness
- Headache
- Tiredness
- Weakness
- Anxiety
- Back pain
- Cough
- Dry skin
- Hair loss
- Joint pain
- Loss of appetite
- Stomach pain
- Mouth sores
- Muscle aches
- Taste changes
- Trouble sleeping
- Vomiting
- Weight gain
Looks like I’m ready to get this party started.
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 