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Good Meetings at Duke

Quick Update

We went to Duke and were very impressed. We are going to work with them and they are going to allow the Atlanta Cancer Care Center to administer the chemo, which begins in five days. I’m hopeful and enthused.

Size

People frequently ask how big my tumor is now. It’s approximately 3 x 6 x 3 centimeters — bigger than we want it to be. It’s causing edema (swelling) of healthy brain tissue and I believe that I occasionally feel a sensation of pressure behind my right eye because of it.

Focal seizures

The Grand Mal Seizure which began my adventure was easy to identify as a seizure. I collapsed and was unconscious and it took me a while to revive and a few minutes more for my thoughts to become clear. This has not happened more than that one time. What has happened only very recently are some strange occurrences which Duke suggests are known as “focal seizures.” Here are a few examples:

  • Tina and I were watching a movie. I start looking around trying to identify a faint rhythmic noise I think I hear behind me. Maybe it was part of the movie soundtrack or my cat’s electric drinking water fountain. I never figured it out and it went away.
  • On a half dozen occasions, I’ve had intense sensations of déjà vu or flashes of situations that remind me of a movie or song that I can never identify. It’s hard to describe. It usually fills me with excitement and is quite enjoyable.

Motorcycle

I continue to ride. If I ever have the slightest waver in balance or coordination or fogginess of thought, I wouldn’t even think about riding. I’m sure chemo will impede my riding for a while and I’m okay with that. My goal is to fight to ride another day.

That’s the meat of this update. Below are the tedious details which may only be of interest to other GBM patients. I forewent my usual attempts at clever rhetoric.


All the Details

Duke Appointment

Our appointment at Duke’s brain tumor center was seven hours long and involved separate meetings with various people (neuro-oncologist, RN, trial advisor, clinical pharmacist, nutritionist, social worker,) to discuss my options. They were so thorough and helpful, that I realize this may have been the best facility to go to in the first place. I suppose I had to go through all the trials I’ve been through in order to appreciate the value that Duke actually has to offer.

The one thing that is clear is that I need to take action as soon as possible to stop the tumor from growing. Otherwise I’m likely to become symptomatic (memory, speech, vision and mobility problems), suffer seizures, and risk death.

I will begin a treatment of Avastin and Irinotecan next week. I will also considering whether or not to supplement this treatment with another chemotherapy, Carboplatin, which is supposed to improve survival in people who are Avastin-naive, which I am (that is, I’ve never been on Avastin before).

All three of these agents are delivered intravenously. The first treatment will take about 3 hours to complete (almost 5, if I decide to go with Carboplatin). I will be treated in Atlanta but have to return to Duke every two months for MRIs and evaluations.

I did qualify for one clinical trial (AMG-102). Again, risks outweighed potential rewards. My apologies to future GBM patients whom I may have let down by not helping determine the toxicity of this investigational drug.

Feelings…

About Duke

We feel empowered and energized after meeting with the team at the Preston Robert Tisch Brain Tumor Center. I suppose since they focus solely on brain cancers they probably truly are the top facility in the nation. I know the other places we’ve been to, Emory, UAB, Rush, are good but they have dozens of other cancers to know about and patients with other cancers to deal with, so how could they always be affluent in my needs for GBM? Those other facilities were hectic with hundreds of other patients when we had appointments. In contrast, Duke’s building was calm. Instead of the usual doctor visit of, wait in the lobby a long time and have a quick visit with the doctor, we had a very short wait and as much time as we wanted with the doctor.

About Avastin

I think I was wrong about Avastin. I thought it was a rough treatment which would be difficult to tolerate. I thought it was really for treating people who were in bad shape and treated symptoms rather than shrink the tumor. I developed this opinion based on my own internet searches and possible misguidance from an oncologist.

I’m now under the advisement from Duke that it has become one of the top treatments for GBM, being administered to newly diagnosed patients along with the Standard of Care treatment. It not only stabilizes tumors, but CAN shrink them.

I have so much faith in it now that I’m ready to begin today.

About the Chemo

Irinotecan is going to help shrink my tumor without debilitating me. This is what I believe, so it must be so.

About Carboplatin

As of this post, I’m undecided about this chemo. As soon as I click the Publish button, I’m calling up my local oncologist to see what her thoughts are. Carboplatin targets cancer cells and causes DNA to kink, killing the cell.

Let’s not be hasty

My title, “Let’s not be hasty,” has a two-fold meaning.

On one hand, my local doctors don’t seem to be in a hurry to get me into the office to discuss my next steps. I have an appointment in two days, but I was hoping for sooner. After all, my tumor has gotten quite large and I haven’t been doing any treatment since Tuesday. Perhaps I’m over-estimating the urgency of the situation.

On the other, maybe I shouldn’t write-off NovoTTF just yet. I spent some time speaking with tech support today. Seems the device registered very many errors in the 33 days I was using it. I justified to myself that the error beeps the device chirped out throughout most days were normal due to heat and moisture and what not. The tech assured me that although errors were occurring, I was still getting treatment. I should have just replaced one of the parts as they forewarned me I might need to do.

Since I’ve not been prescribed any other treatment now and have a couple days wait before meeting with my oncologist, why not just put the headgear back on, replace the cable connector, use a replacement TTF device and continue the treatment?  So that’s what I did today — and what do you know? — the device hasn’t indicated any errors at all. It’s encouraging but I wish I had done this 32 days ago. I’m concluding that maybe I spent the last 33 days undergoing less than optimal treatment. No point dwelling on what can’t be changed.

On this day

100 years ago today, Julia Child was born. Tina treated me to dinner at Babette’s Cafe where the menu was Julia-inspired. I suppose we were also commemorating the one year anniversary of my first craniotomy. This time last year, I suspect I was surrounded by family, completely lit on Dilaudid and Percocet,  and annoyingly flirting with nurses. Tonight, I’m very happy.

Blackened

The long and short of it

My tumor has increased in size significantly. We hope to meet with our team of neuro professionals as soon as possible to discuss implications and options.

Prologue

If I had written this post earlier in the day, it would have read very differently. I was in a blackened state. Not at all the beacon of optimism and hope, you’ve come to know and love. The version below should read more colorfully.

Chapter 1 — Battling Cancer

On June 1, 2012, we launched a second surgical attack on the GBM in my brain. Although my surgeon dealt it a decimating blow, the nefarious tumor cleverly attached itself to my Sylvian Fissure, preventing total gross resection. So to finish it off, I decided that the second-wave offensive would be the NovoTTF-100A device. After all, why bring out the big guns, like Avastin, and suffer it’s chemo casualties, when I can be on the FDA-approved progressive edge of fighting cancer?

Chapter 2 — Progress Check

Today is August 14th, 2012. Tomorrow is the one year anniversary of my first craniotomy. I’m thirty-three days into using the NovoTTF-100A device. Tina and I walk from our hotel to my appointment, enjoying the beautiful Chicago morning. I’m confident and haven’t the slightest anxiety.

First up — 8am MRI. The Northwestern radiology staff are wonderful. The facility was quite nice. It almost felt like a spa visit (at least to me – I can’t speak for Tina).

We then headed upstairs, eager to hear the doctor’s positive review of the MRI, so we could go explore The Magnificent Mile before returning to Atlanta.

Chapter 3 — The Big Reveal

We arrived at the outpatient cancer center and spotted our two Novocure reps. They were there to download the performance data collected by the TTF device I had been using. We all exchanged hugs and niceties while doing the compulsory doctor-visit wait and recording of weight, blood pressure, et cetera.

After a short wait in the exam room, the nurse practitioner came in and bluntly informed Tina and I that the tumor had grown dramatically — almost four times last month’s recorded size. She wanted to get a sense of what we wanted to do now (that is, continue with failed battle plan or try Avastin or a trial).

I was pissed off. Not so much because of the bad news. Moreso about how it was delivered to us. Why wasn’t a doctor talking to us about this sensitive information? I felt so bad for poor Tina. News, good or bad, takes a while to sink into my thick skull. But Tina “gets it” immediately. She was visibly shaken by this horribly disappointing and unexpected report.

I settled down and the doctor soon came to see us, giving us all the time we wanted to grill him with questions and concerns. He was great actually and I see now that the NP was also doing her best to help us. We thanked them graciously and parted well.

Chapter 4 — Let’s Be Honest

In our meeting, the doctor revealed that he didn’t have the highest of expectations for the device. He seemed keen on Avastin and trials. But Novocure is an interesting product. (I know because I get asked about it by strangers every day.) They’ve got some good results data. They’ve got no debilitating side effects. These two criteria have garnered quite the hype. It sure sold me.

Tonight, a good friend picked us up from the airport and took me to dinner where he revealed that all along he thought the thing looked like an experiment and, as much as he wanted it to work, just never thought it was going to. I don’t begrudge him that. It seemed to be the same opinion the doctor had.

I am not saying that I think the device is not effective. Of course every person’s situation and results are unique. I may very well continue to use it. But I know I have to do more.

Chapter 5 — Regroup, Strategize and Continue the Fight

I’m trying to rally the Emory troops ASAP. We knew this was a potential outcome so we’ve already discussed back up plans. We know it’s time to be aggressive. Could there be a third craniotomy? Possibly. If the surgeon says it’s reasonable, I will be strongly compelled to go that route. My previous brain surgeries seemed to go pretty well in my eyes. Afterall, I can still function and even take the bike for a spin every once in a while. But it wouldn’t end there. We’d have to get started with another treatment soon thereafter — maybe take another stab at Temodar; or maybe it’s time to bite the Avastin bullet. Another clinical trial is a strong option, but I won’t do another double-blind, randomized, placebo-controlled study. I don’t mind helping advance science and all, but I’m selfishly more concerned with me right now.

Chapter 6 — But, What If…

Tina and I will have to consider other (crazier) scenarios. Maybe this is a good time to take that trip to Africa we’ve dreamt about for over a decade. Maybe we’ll see if Tommy Chong needs more crusaders on the cancer battlefront. At the very least, get into an ocean before the season is over. Also, other countries have options not available to us here in the U.S.

Chapter 7 — The Very Thought

While I’m being open and honest, the Africa trip idea, is clearly a romanticized answer to the classic “What would you do if?” hypothetical. Medically, it means “doing nothing.” What happens if I have a seizure out on the savanna? Are there adequate medical resources? Spiritually, maybe it’s just the ticket. I’d still have my friend’s prayers working for me.

Maybe it’s just my time. I’m not afraid. Many things in life are scary. High-speed weaving through Atlanta traffic on a motorcycle, for instance. Or scraping pegs on The Tail of the Dragon with an oncoming logging truck taking up half your lane. Or having to buddy breathe on a slow ascent and safety stop before surfacing because of equipment malfunction. I’m sure you’ve got your own close-call, adrenaline-inducing experience to relate to. I’m saying, maybe dying is just the final scary-exciting experience of life. I’m neither eager nor prepared for it. But it’s not going to intimidate me into sacrificing enjoyment and fulfillment while I can still pursue them.

Who Knows? (That’s not another chapter — just my final thought.)

TSA agent giving my gear a wipe-down. They even gave Tina a No-Alarm pat-down. (It may have been for associating with a suspicious guy with strange head gear).

Tina and I having a raw, vegan lunch at Karyn’s Cooked in Chicago. The food was really tasty. Strangely both of us felt slightly off afterwards. Maybe from soy overload.

Novo TTF-100A, First Impressions

I thought this was going to be easy. At least easier than taking and suffering the consequences of chemotherapy.

I’m talking about the treatment I’ve just begun — wearing the NovoTTF-100A device. It’s only about 4 pounds of equipment and some tape and wires on the head. Doesn’t sound so tough.

But in only five days of treatment, I’m weary from this. Even four pounds dangling from your shoulder constantly can be tiring. And when not carrying the device, I’m tethered by wires to an electrical outlet. I’m able to do my normal activities. It’s just a bit trickier. For instance, I went to a concert three days ago. It went pretty well but stubble on my head interfered with the connections and I had to remove the device for several hours. Not a big deal but I need to wear it as much as possible for maximum benefit. Since my tumor has clearly grown rapidly, I need to maximize time. Coincidentally, here’s a picture of a guy seated in front of me at the show.

brain tattoo

Other complications include:

  • electronics and water don’t play well together.
  • the head gear remains in place all the time. It’s like wearing a baseball cap ALL THE TIME, even to bed. I really want to take my hat off.
  • heat. The unit gets warm. Batteries get warm. Arrays on the head warm up. This will be great in winter, but not so much during summer in Atlanta.

I’m not officially complaining. I’m sure things could be worse. If it works, I suppose it’ll all be worth it. I get an MRI to see progress in about three more weeks. Success will be either no further tumor progression or, hopefully, tumor reduction.

I’m Wired with NovoTTF-100A

Yesterday I was fitted with the NovoTTF-100A device from the company NovoCure.

I was also Chicago Midway airport’s biggest security scare of the day! Actually the TSA agents were courteous and professional even though it was clear they were not familiar with the device. I did not mention that this technology was developed in Israel.

You may be able to see in the headshot that quarter-sized ceramic disks are hooked to wires and taped to my head. They do heat up a little bit but it’s not bad. Having had the arrays strapped to my head for about 24 hours, I just kind of feel like I want to take my hat off, but I’m sure I’ll get used to it.

The arrays remain strapped to my head all the time up until they need changing which could be every three to four days depending on factors like hair growth and sweat interfering with making a good connection.

Then we travel to Chicago every month to monitor progress via MRI.

This is a monotherapy (not intended to be used in conjunction with chemo). It is NOT a trial. It is FDA approved. After the standard of care Slash and Burn tactics (i.e., surgery and radiation), NovoTTF is intended as an alternative to the Poison (i.e., chemotherapy) phase.

TTF stands for Tumor Treating Fields. It’s just alternating electronic fields that are intended to disrupt rapid cell division exhibited by cancer cells.

Side Effects

So this treatment replaces chemotherapy. What are the side effects? The skin on my scalp may get irritated. That’s a lot better than nausea, lethargy and the other side effects associated with chemo. It’s a little bit of a pain to deal with lugging around these electronics and I do get a lot of stares. That’s clearly a small price to pay to stay alive.

More information

Here are some informative videos for anyone interested.

I’m glad to be using this promising treatment especially since traditional chemo did not seem to be effective for me. That’s about all of the medical update for this post.


A Final thought — Meeting new people

In the airport, Tina and I sat in some seats next to electrical outlets, so I could get some treatment time in while waiting for our plane. None of the outlets on that wall worked. So I began to walk around looking for another outlet. A gentleman waved me over to use the outlet his phone was charging on. He asked about my strange head gear and in fact recognized it because his boss was none other than Bill Doyle — the venture capitalist who helped fund NovoCure in this venture. I knew the name Bill Doyle because of his video on ted.com about NovoTTF, which really got us excited about the product. See the video here:

http://www.ted.com/talks/bill_doyle_treating_cancer_with_electric_fields.html

It felt like fate guided me to meet this person. It was very encouraging because he said that Bill Doyle is very sharp and if he chose NovoCure to invest in, it’s because he’s confident that it’s going to be a success.

Approved for Novocure

We found out yesterday that I’ve been accepted by Northwestern University in Chicago to use the Novocure TTF-100A device. We had to push for it. They wanted me to first try Avastin and experimental chemo drugs. I want to try Novocure first.

What is it?

The Novocure TTF-100A uses “tumor treating fields” that are delivered to the tumor by applying electrodes on the skin. The fields can kill some of the dividing cells and has no apparent effect on cells that are not dividing. (In the brain, most of the dividing cells are tumor cells).

Does it work?

Here are some statistics from some trials.

As of December 2011, two of the original 10 recurrent GBM patients from the pilot trial are alive and well over 7 years after starting the trial. (I don’t know about the other 8.) The device by itself was compared to the best available chemotherapy.

There’s no way to say, “it works.” It’s just another tool. It’s not an alternative treatment — it’s a new form of standard treatment.

Pros

  • No side effects! (no nausea, lethargy, appetite suppression, sores or any of the other horrible symptoms experimental chemo can have.)
  • It is FDA approved, meaning it’s SAFE to use and insurance will most likely pay for it (and it ain’t cheap).

Cons

  • I have to wear a skull cap of electrodes (most likely all day every day)
  • I have to carry around a backpack or shoulder bag containing the electronics.
  • I have to travel to Chicago, probably monthly (and Chicago ain’t cheap either).

Maybe I’ll be able to modify and customize the gear so I don’t look like an electric chair escapee. If the headgear fits under a motorcycle helmet, I’ll be just fine.

That’s the end of the major medical update. Thanks everyone for your support and comments. Below are just some personal updates with a humorous slant for anyone interested. In fact, the content may not be suitable for all audiences (mom). (Just kidding, I know you’ll read it all.)


Manly Man

The results of my testosterone test showed that I’m low. I blame it on the Dexamethasone I had to take after surgery. Today is my first day using a testosterone gel. I rubbed it on my shoulders this morning and… went to a yoga class. (I know — that seems kind of girly for being pumped up on testosterone. And that’s another joke. Yoga is a great practice that I value and recommend for everyone. Plus, girls in yoga outfits? Yeah.) Anyway, after this post I’m going to take a long vigorous bike ride. It could be in my head, but I think I feel bursting with energy.

Damn Narcotics! — The “E” word

The pain from the surgery has subsided so I tapered off using the opioid, oxycodone. Unfortunately, I did not continue the Docusate Sodium (stool softener). If you don’t know, narcotic pain relievers cause constipation so you increase fiber and take a stool softener — or you’ll be sorry. Well, I quit that part too soon and have been paying the price.

It gets more graphic from here, so don’t feel bad about skipping to the next section.

I’m not talking about the pain involved in passing a large, hard stool. I’m talking about abdominal pain that extends to the testicles and penis. The second worst pain I’ve ever had (the first being kidney stones). So I decided to violate my “exit only” rule and got an enema kit. It made a little progress, but more help was needed. I was going to try castor oil, which is supposed to be fast acting and tried and true. But I opted for a liquid glycerine suppository. That worked QUICK. I’m not out of the woods yet. I think one more day and I’ll be completely free of this burden and will never make that mistake again.

Art

I have been doing some painting but I’m not ready to show anything. But I did scribble some chalk drawings on the sidewalk yesterday. Can’t really call it art, but it was fun.

Maiden England 2012

I’m a metal head. Turns out it wasn’t just a phase when I was 15. Heavy metal legends, Iron Maiden, who I have never seen live, played last weekend in Atlanta. Some great friends came from as far as Louisiana, Southern Florida and Alabama to take me to the show. The show was great, but experiencing it with good friends really made it special.

Walking through the parking lot while people were tailgating, I overheard an arrogant critique of my hair style (mostly bald with a patch of hair in the back). I turned to make eye contact, but remembered the bicycle confrontation I wrote about in the Why Can’t We All Get Along post. If it’s not important, don’t waste any effort.

Slayer and Motörhead play July 14th. I’ve also never seen Lemmy and the gang, so come join me for that show.

Cycle 4 Update – Roll Tide

(This was going to be a short entry but somehow evolved into a novella.)


The MRI from my March 19, 2012, Cycle 4 appointment at UAB revealed no tumor recurrence. The cavity in my brain looks good.

Tina breathed a big sigh of relief.

I was unfazed. I mean, I was glad to hear the good news, but was not surprised at all. We then drove three hours back to Atlanta.

Upon returning home, I was immediately overcome with fatigue, collapsed into bed and slept heavily for several hours. Now this was a surprise to me because I’ve been getting plenty of sleep, including the night before. I suspect that while I consciously don’t feel any sense of anxiety or fear about the cancer manifesting as a deadly tumor, I might unconsciously carry it as an exhausting burden. Maybe hearing the good news allowed me to release a tension of which I was not aware.

In any case, I feel great now.

Why Do I Have to Take Keppra?

Alternate heading: The UAB staff is fantastic.

It’s bugged me for months. A tumor caused my seizure. The tumor was removed. Why do I need to take anti-seizure medication twice a day? I’ve asked this question to several physicians and always got a vague answer that registered in my mind as, “because we say so; once a seizure, always a risk.”

I posed the question to Richard Taylor, DNP, CRMP at UAB and he simply explained that my brain isn’t the same anymore. Simple as that. Signals travel through the brain and if they happen to be going towards the area of my brain that was compromised, things could go haywire and another seizure could happen. Maybe; maybe not. Why not take drugs that can reduce the risk of this happening? That convinced me.

Why Is My Temodar Dosage 400mg When the Formula Reveals the Range is 280 to 380 mg?

Alternate headings: The UAB staff is fantastic; Knowledge is Power

I again questioned UAB about the dosage of Temodar I am being prescribed. Dosage is generally based on the formula for Body Surface Area (BSA) multiplied by a range from 150 mg to 200 mg:

BSA (m²) = ([Height(in) x Weight(lbs)] / 3131 )½

While it’s easy to just take what the doctors prescribe, I found great comfort in the detailed explanation that DNP Taylor provided me. What the formula doesn’t account for are my closely-monitored blood counts and (lack of) toxic side-effects. Him taking ten or 15 minutes to explain this has made it so I completely understand the rationale and don’t have to wonder about it every night I down a handful of chemo.

What About Next Steps?

Alternate heading: Once Again, UAB Kicks Ass.

We constantly educate ourselves on options and possibilities. Ok, my wife, Tina, does most of that work. We asked UAB doctor Burt Nabors, M.D. specifically about Novocure Tumor Treating Fields therapy as a Plan B in case of recurrence. Our research (the company’s biased website) made it sound like the cure for GBMs. Dr. Nabors gave us his thoughtful, informed and thorough opinion about it. While it is still of interest, there just isn’t enough data for UAB to invest resources into becoming a certified provider. FDA approval just means it’s safe — not necessarily effective.

Whenever we tried to ask other oncologists about “what-if” scenarios, they all want to cross that bridge when we come to it. I know doctors are busy and don’t have time to play out all the possibilities, but all the UAB team members have been extremely accommodating to us.


Although I attended Auburn University and am not a college football fan, I’ve got to exclaim:

Roll Tide!


Alternatives — Emotional Energy

I continue to explore other sources of healing. I went to see an Emotional Energy therapist. Here’s a quick overview. Through muscle testing, the therapist revealed that I have some unresolved resentment from around age 16-17. Well, who doesn’t? That’s a crazy age. But more interestingly, she suspects that I even have some resentment from just before birth. Like maybe I wasn’t quite ready to come into the world but was plucked into existence via forceps or something. Going to have to talk with Mom about that one.

But the real interest here is that some practitioners of Eastern medicine advocate that some chronic illnesses, like a tumor, can be caused, at least in part, by emotional trauma. It sounds a little cooky to us Westerners. I have higher priorities to focus on but may consider going back for a follow-up visit.

I think Ayahuasca sounds more fun and equally worthwhile though. Anyone interested in a trip to Peru?

Under the Protection of Vulcan

Vulcan

The statue of Vulcan in Birmingham is well-known in Alabama. In ancient Roman theology, the god Vulcan was worshiped to avert the destructive powers of his fire. This power was however also considered useful if directed against enemies. I’d call cancer an enemy, so I’m glad to be under his symbolic watch.

Medical Update

The transfer from Chicago to Birmingham is complete. I’m officially participating in the ICT-107 clinical trial at the Kirklin Center at UAB as of January 23, 2012. This visit concludes Cycle 2 of the Extended Maintenance Phase. I had an MRI. The images showed no tumor growth. Things look pretty good. I will continue with chemo. My weight is down to 160 pounds. Dosage for Cycle 3 is 400mg of Temodar.

Personal Update

In the past I hardly knew anyone affected by cancer.
Now everyone I know is.

I feel very good. I wasn’t surprised by the MRI results, mainly because I intuitively “feel” like it hasn’t come back. I am relieved of course. I feel like I can start doing things now, like planning a get-away for Tina and I; planning visits with friends en route to Birmingham.

HuevosHuevos

Between Atlanta and Birmingham is Gadsden, where I spent my youth. Tina and I stopped there to visit briefly with family and to have some of my sisters famous huevos rancheros (which were fantastic). My sister sent me this email the next day:

Knowing how excited fresh eggs would make you and Tina, I asked my friend to ask her neighbor for three eggs. I know they own chickens and occasionally share when they are well stocked. The neighbor informed my friend that the hen is molting and hasn’t laid any eggs since November. Molting uses protein to produce new feathers which slows or stops egg production. The next day, the neighbor called my friend, shocked that he found three eggs the next morning. He claimed he hadn’t seen that before so he gave them to our family because he felt it was meant to be. I’d never met those people before. Very kind act!

Old Friends

I have several friends in Alabama from back in the day.

Can someone really be called a friend if you haven’t had any contact with them in 20+ years?

I found the answer to be a resounding Yes. The bond you make with someone from kindergarten to twelfth grade can be pretty dang strong.

Quite conveniently, old school days friend, intimidating center forward, amateur herpetologist and dexterous speed skater, Matthew White*, lives right next to UAB and he was willing to put up with Tina and I for the night.  Thanks, Matt, for the generosity. It was great catching up. I’m going to push your hospitality to it’s limits over the next year.

* Those are descriptors for the Matt I knew when we were kids.

In fact, there’s so many people I want to catch up with, we might just have to throw a party so I get to see everyone.

New Friends

I have a new group of friends too. Things we have in common include:

  • Frankenstein head scars and titanium implants
  • wacky hairdos
  • taking dangerous drugs
  • and a strong desire to beat the 14 month death statistic

Those friends whose struggles are more difficult than mine inspire me to treasure and appreciate the good things I have going for me. They also keep me motivated to not slack off because of some good MRI results.

I hope I can serve as inspiration to them to not give up hope. Find joy however you can. Revisit positivity between bouts of anger, depression and frustration.

Thanks

Thank you to everyone who is sending out positive, healing energy on my behalf. That energy comes in many forms: prayers, tonglen, beer-drinking and Hell-raising, Facebook posts, blog comments, silent thoughts and inappropriate jokes. I appreciate them all!

Goodbye, Chicago. Hello, Birmingham

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.

Chicago Tribune

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.

Let the Extended Maintenance Phase Begin

Biking

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.)

Riding the Dragon

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