Going forward, I may try dividing posts into medical and personal sections. This should make it easier for people who are just interested in the ICT-107 trial.

Medical

I had my final Chicago treatment visit. Blood tests were fine. I got the vaccine injections. They caused the same flu symptoms, which Tylenol helped alleviate. We thanked Liz and Dr. Aiken for their wonderful care and attention. My case is being transferred to the University of Alabama at Birmingham comprehensive cancer center because Chicago is too far away, too expensive and too cold. My first visit to UAB will be for my second MRI.

In front of Chicago Tribune building.

Personal

We flew to Chicago on Christmas Day (Sunday). It’s a great day for travel — most people are at home.

My appointment was on Tuesday so we had all day Monday to explore the city. Unfortunately everyone else had the same idea. We tried to see the Dr. Seuss exhibit at the Science and Industry museum, but it sold out as we waited in line. So we went to the Art Institute of Chicago instead. It was inspiring for me. I hope to get into the studio soon for some painting.

Another big stop of the day was a visit to Pastoral to sample and buy artisanal cheeses. For my foodie friends, I was excited to buy a limited-production cheese I had been wanting to try for years — Upland Cheese Company’s Rush Creek Reserve.

We ended the day with a fantastic meal at our favorite Chicago restaurant, North Pond. I loosened the reigns on my self-imposed dietary restrictions so I could enjoy the seasonal tasting prix fixe menu with wine pairings!

Dinner at North Pond Restaurant

I’ll miss the culture, architecture, food, art and vibrancy of Chicago but I’m ready to move on. I haven’t visited Birmingham in a long time. So I look forward to checking it out again. But mostly look forward to all the friends I can reconnect with who live there or nearby.

Chemo Time

Today I rehash my relationship with chemotherapy (Temodar). It’s difficult to embrace taking chemo because it might be beneficial for me, but it could also leave me weakened and hurting.

I start chemo tonight before bed. I will take a dose double that which I took previously. I take it for five consecutive days at the beginning of every month for the next 12 months.

Cross Training

The weakness/soreness is my knee is probably from de-conditioning rather than treatments, so part of my next-phase regimen is to increase my physical activity as I enter this new phase of treatment. Yoga, weight lifting, old-school calisthenics and biking (bicycling, that is).

I haven’t been on a bicycle in… possibly two decades. I dusted off an old ten-speed this afternoon and went for a short ride through my hilly neighborhood. Let’s just say, I’ve got a lot of work to do to get back into shape. My quads got sore; my heart beat fast; I’m tuckered out. But it feels good, and it was fun. (Not as fun as the motorcycles, but better for my health.)

Tail of the Dragon at Deal's Gap (US129), NC, 2007

This week’s visit to Chicago was uneventful. I got the vaccine and we discussed transferring my case to UAB. I will only have one more trip to Chicago at the end of December. Thank goodness. Although spending some time in Chicago has had it’s up-sides, it is a lot of trouble and expense, even with the help of my support network connections.¹

Now that I’m nearing the end of the trial’s “maintenance phase,” I’ve turned my attention to understanding the “extended maintenance phase.” It looks like I’ll have to travel to Birmingham once a month for the next two years. I’ll also begin taking temozolomide (a chemotherapy drug) again — at twice the dosage as before.

Conflicted

I’m conflicted about getting on chemo again. It’s known to decrease blood cells and other possible side effects. Doubling the dose and taking it for another year could hurt me more than it helps. There’s no way of knowing if it’s really helping. The more research and reading² I do, the more complicated decision-making becomes. I may continue this line of thought later. Writing out my thoughts helps me weed through my options.

Supplements

I’ve begun taking a supplement — yellow root. Berberine is the major alkaloid in yellow root and there are lots of studies that say it is beneficial for fighting my cancer. More on this topic later.

Photo

The photo on this post is of me as the human porcupine, compliments of Lisa White, my acupuncturist.

1 Sincere thanks to:

• Bruce, Diane and David for transport to and from the airport.
• Carol for the corporate apartment connection.
• Will for the AirTran buddy passes

2 Reading material:

• Love, Medicine & Miracles, Dr. Bernie Siegel — a surgeon’s experience and perspectives on the importance of love and mind-set to the recovery process. Also the importance of having the right doctor.

For this trip to Chicago, we stayed at the Hard Rock Hotel.* We were on The Beatles floor. The photo above shows the mirror in our room. In case someone can’t see the photo, it shows an inscription of John Lennon’s quote, “You may say I’m a dreamer, but I’m not the only one.”

More travel troubles at the airport again, but we eventually made it there.

My appointment with the doctor went smoothly this time though. My vaccine was ready and waiting. I passed my neurological exams again without any missteps. This time the injections went into my right armpit. And just like last time, about six hours after the injection, flu-like symptoms set in — chills, slight fever and aching. At least this time I was in the comfort of my own home, rather than on a plane. After a long sleep I was back to feeling fine.

Good News, Bad News

After three months of pursuing Social Security disability benefits, I have been approved. This is good news because the only work I am capable of focusing on right now is survival. From what I hear, it’s amazing to be approved for SSI benefits in such a short time. Most applications are denied and the appeal process could require lawyers and take over a year. There is a list of conditions/diseases that the government has approved for expedited review. My cancer, GBM, is one of them — which could be considered the bad news. That is, the government’s willingness to approve my application so “quickly,” validates that my condition is… critical. Nevertheless, I remain optimistic. And I know that all my supporters do too.

Next steps

My sister and brother-in-law (Sharon and Albert) visit us via motorcycle on a beautiful Fall day.

Sunday, November 20th, we go back for my third injection. But more importantly, I’ll have my first MRI since the surgery. I’m curious to learn what’s physically happening inside my skull. Options include: no change, tumor recurrence or necrosis (death of healthy cells, possibly from radiation). No (detectible) change is, I guess, the best I can hope for right now.

We are still waiting to hear if my case will be transferred from Chicago to Birmingham. Beginning in December, my injections go from weekly to monthly but they are to continue indefinitely. Traveling to Chicago is inconvenient. It’s stressful to us physically and mentally. It puts a strain on Tina’s career. And, it ain’t cheap. Going to Birmingham (UAB) for treatment will be more affordable and will allow me to impose on (I mean visit) friends and family.

* A note regarding our travel accommodations. Chicago is expensive. We’re lucky to have occasional use of a corporate condo for free. But when we have to foot the bill, we use JetSetter to get good deals on hotels. It’s a free-membership travel deal site. If you’re interested in signing up, using this link (http://www.jetsetter.com/invite/tinamaudsley) will give us credit if you book a stay via JetSetter. We used the site in April, 2011 to get a great deal in Ixtapa, Mexico to celebrate our 15 year wedding anniversary (See photos, if interested). Sorry to sound like a pitch here, but I was an internet marketer before all this.

On Tuesday, November 8, I received my first injection of either my custom-made vaccine or placebo for the ICT-107 clinical trial. Several hours after the shots, I experienced flu-like symptoms, which went away after a good night’s sleep. So far, so good. That is the crux of this update. Gratuitous details below.

The Long Story

My scheduled appointment was for 9:00 am. As the nurse approached, the look on her face told us something was wrong. The lab did not ship my vaccine. We would have to stay in Chicago an extra day to wait for it. The repercussions of this include extra expenses, Tina’s job responsibilities, rescheduling other commitments… not an acceptable scenario.

Tina took the bull by the horns and set in motion a plan to have the vaccine delivery expedited so that it would arrive (from Philadelphia) that day with time for us to make a flight back to Atlanta that evening. Because the lab made the mistake, all our expenses would be paid by the trial sponsor. Unfortunately, the only seats available for the flight home were in first class. What can you do?

The flight from Chicago to Atlanta was delayed about two hours. This was just enough time for symptoms of the vaccine to hit me as we boarded the plane. The four blankets I was buried under did little to quell my chills. I had to pass up the perks of first class, but at least I had room to toss and turn.

We are choosing to view these symptoms as a sign that I got the real vaccine as opposed to placebo. I expect the lab might design the placebo to have similar effects though.

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.