Tina and I traveled to North Carolina and back yesterday for my appointment at Duke. They told us that the MRI shows that the tumor has shrunk by about 25%. This is great news.
I say I’m dazed because I have a lot of options from which to choose. In addition to the necessary evil (i.e., toxic chemo) I plan to pursue holistic strategies more diligently going forward. I just have to be careful about complementary and alternative medicines because they can be so good for the body on a cellular level that they could impede the chemo and help the cancer thrive. I just don’t want my treatment to be all poison. Unfortunately, no one can tell me with certainty what strategy is best. There are plenty of varying opinions out there. I have to go with my gut. (Since my appendix ruptured, maybe I should say, “go with my heart.”)
I am continuing with the Avastin and Irinotecan infusions. Since they seem to have done some good, it’s not unreasonable to assume (or hope) that they will continue to help.
Last weekend Tina and I had a yard sale and before getting rid of some old movies, we watched Phenomenon (1996, with John Travolta, Kyra Sedgwick, Forrest Whitaker, Robert Duvall). I do not have telekinesis or savant brilliance, but the movie definitely struck a chord. Might be worth a watch if you haven’t seen it.
Today I had my fourth chemo infusion. This time, Avastin was excluded. This is not good news because Avastin is the key drug that everyone has their money on as being the most effective at fighting my tumor.
Below the Belt
So the abdominal pain I blogged about previously is cleared up. Drain tube is removed. No more pain. Doctors are not clear whether I still have an appendix or whether it perforated/ruptured three weeks ago.
An MRI to see if this chemo regimen has been effective will be done in two weeks. Then we’re off to Duke to discuss options. Here’s a quick review of modern-medicine best-of-class tactics tried so far.
- Temodar — FAIL
- ICT-107 trial — FAIL
- Novocure — FAIL
- Avastin — FAIL
Shit, all the good choices are gone. Avastin MAY be reconsidered in the future. There are more clinical trials; more alternatives; MORE HOPE. I’m not concerned. At least, I don’t consciously think I’m concerned. I notice that I began erasing myself from LinkedIn — leaving Groups that are no longer relevant to me. I’m almost done creating succession plans for my freelance web and design clients. I’m not doing this because I think the end is near. Maybe I just don’t want to go back to that life or career. I have options for that when the time comes.
How am I Feeling?
Despite some bleak news above, I still feel physically, mentally and emotionally strong. The weather is fantastic. I’m dying to take my motorcycle out for a spin. The only thing stopping me is my own caution. No sense risking overdoing anything right now.
I was hyper-aware of motorcycles today though. On a walk today a bike passed by and I noticed how good it sounded as it’s deep rumble faded down the road. Same walk, I saw a young girl riding a Honda 50 that resembled the one I rode when I was 13. I vowed to revive my ’82 Shovelhead and do some Fall riding.
As much as I love cooking, I’ve noticed a decreased interest lately. Months ago a neighbor volunteered to sign us up for Food Train — a means for friends and neighbors to volunteer to drop-off a meal or some food. So I finally gave in. Here is a link for anyone interested in participating.
CT Guided Aspiration Drainage
I started my day with a gurney ride to Radiology. After downing a bottle of contrast, my food-starved, narcotic-fueled, sleep-deprived body was barraged by waves of trembling and voracious teeth chattering. Basically, reactions to being cold except they were very exaggerated. CT imaging revealed an abscess in the vicinity of my appendix. An area below my navel was numbed with topical anesthesia. I was infused with benzos to relax. I suggested they just knock me out! I really didn’t care to FEEL or remember the procedure. I did not get my way. But it was quick and mostly painless.
Two weeks ago, the oncologist assumed my GI pain was a kidney stone or urinary infection. Now, she suspects that my appendix ruptured. The goals of today’s procedure were to:
- remove fluid, thereby reducing pressure and relieving some pain;
- collect samples so that the Infectious Disease team can identify specific bacteria present as well as the proper antibiotics to combat the bacteria and remedy infections;
We need to treat infection with antibiotics to avoid, or at least post-pone surgical removal of my appendix. Avastin compromises cell health which would complicate recovering from surgery. Avastin is known to cause GI complications and is probably responsible for all this trouble.
I was released from the hospital today.
My own self evaluation of my overall wellness is entirely positive!
When unexpected complications arise, I’m reminded that October is the month for me that corresponds with the ominous 14 month death statistic. Despite a few recent hindrances, my physical, emotional, spiritual and mental well-being remain great. Plus, the tremendous outpouring of love and support for Tina and I is like a vaccination against despair. I don’t claim to be self-actualized or enlightened. I still fall prey to petty annoyances.*** But all-in-all, Everything’s Gonna Be Alright.
Too Much Information
A drain tube protrudes from my lower umbilical area and empties into a collection bag that I can strap onto my leg. Tina was instructed on how to flush the drain twice a day to keep it clean and clog-free in order to collect excess blood, pus and who-knows-what. I’m not sure how much fluid is expected to collect in this bag. It could turn out to be a good Halloween costume. Actually, it brings to mind, artist Andres Serrano!
*** some hospital experience examples, for the fun of it (and to waste more time)
#1 I understand that the statement, “How are you,” is a common and friendly greeting. But if I’m having an off day, it irritates me when hospital staff casually ask. I’m not going to retort with, “Fine! How are you?” if I am not. So I respond with, “Hello.” Or I deflect by asking them the same question. Most often, I don’t respond at all which is probably perceived as rude. I don’t know why I let this bother me. But I disappoint myself when I succumb with a fake, pleasant answer? Honestly, I’m not an advocate of political correctness but I think it would be reasonable for hospital management to suggest to employees that maybe a neutral greeting would be more appropriate when addressing their customers, the patients. Something like, “Hello” is probably fine. I know the topic doesn’t deserve this much consideration. What’s wrong with me?
#2 During my overnight stay in the hospital, I was checked on by a nurse every hour throughout the night either to change IV bags, evaluate pain status, take vitals, etc. So, it wasn’t a very restful night. When the morning shift change happens, it’s like the party gets going and the noise level cranks up. Then the new nurse comes in the room and greets me with a chipper, “Good Morning!” which sounds to me like encouragement to get up. Sorry — I’m laying in bed for two more hours. Can you keep it down!?
#3 I won’t go into a rant of the deficiencies of patient profile questionnaires, but that’s another hot button topic for me.
My third infusion of Avastin and Irinotecan went well. I felt lousy for a couple days but seem to be back to normal now.
Benefit Events Update
The two-day benefit, Kebostock, was a success — good weather; nice turnout; great music. At the end of the day, it hit me. I realized the immense effort, love and generosity put forth by organizers, sponsors, family, friends and the community. All in all, we estimate about 300 people showed up. I wish I could have spent more time visiting with everyone. Thank you!
The rest of this post is just personal or fun stuff — no relevant medical information.
A family friend graciously let Tina and I stay at their lake house. The morning of the event was so lovely that we decided to eat breakfast outside. We inadvertently locked ourselves out of the house. We had no keys and no phone — and no clothes really. We had no choice other than knocking on a neighbor’s door and explaining our situation. The neighbor turned out to be a member of the band Drop (dropatlanta.com), an Atlanta-based funky, psychedelic, improvisational jam band (think Grateful Dead). He extended every hospitality to us, clothed us in brightly colored hippy shirts and drove us to the festival. He brought along his guitar and played a set of music along-side Albert. Thanks, Craig!
Did someone really get a Kebostock tattoo?
Not someone — two people did!
I thought they were crazy but Matt and Will got tattooed prominently on their chests. I’m blown away and honored at their gesture. The coolest thing is that the tattoo artist, another good friend of mine from the 1990’s allowed me to tattoo my signature on Matt. I had never touched a tattoo gun before! I got a 20 second lesson on tattooing and was let loose. It was a lot of fun.
What happened to the Kebostock banner?
Friday night at Back Forty, there was a nice big banner hanging. Why wasn’t it displayed on Saturday?
The banner may or may not have been “stolen.”
I think credit for the idea belongs to my brother-in-law, Albert Simpson. He’s a musician who has played at other benefit events. He had the connections and know-how to get it done. When he recruited my mother, Cheryle Maudsley, to help, there was no stopping the event from becoming a success.
What will the donated money be used for?
I’m writing this update from the doctor’s office, while undergoing my second infusion of chemo.
About nine days into my first round of chemo, two weeks ago, I began having some lower abdominal pain. Pain and discomfort steadily increased over the next several days. I barely got any sleep the past three nights because of the pain and getting up frequently to use the toilet (or at least TRY to). I thought it may have been an expected side effect — constipation. But this morning at my doctor’s appointment, a urine sample revealed I have a urinary infection. That should be easily cleared up with antibiotics.
So all in all, so far, so good. Unfortunately I won’t get an MRI until six weeks from now, which is to say, we have to wait to know whether the chemo is effective or not.
I got my first infusion treatment today:
- Aloxi, to prevent nausea
- Dexamethasone, a steroid to prevent allergic reaction
- Avastin, to starve the tumor
- Irinotecan, a chemotherapy to cause apoptosis of cancer cells, inhibiting the tumor from growing.
It took about 4.5 hours, start to finish. Eight hours later, I feel good, even a little peppy possibly from the steroid.
That’s all for relevant medical information. The rest of this post is not of much interest unless you’re keeping tabs on my psychologial devolution.
Tina Saves the Day
This won’t be a surprise to those who know us, but once again, Tina takes the bull by the horns. She doesn’t accept an unacceptable answer. She fixes problems.
Last week they told us Carboplatin was not approved for me. Tina contacted our insurance company to find out why. Turns out it was an administrative shortcoming (as I see it). I could have been approved but the finance department didn’t do their due diligence to get it done. Our view on this was, “Ok, fine, we’ll see how treatment goes and maybe add Carbo later. Afterall Avastin and Irinotecan are the Big Two in which we were interested.”
But at our 9:15 appointment this morning the RN informed us that the Irinotecan was also not approved for today. Within 10 minutes Tina had confirmation from the insurance company that it too could be approved and she guided the doctor’s office on how to get the required approval on the spot. We were not leaving without the infusion. Problem solved.
The update gets a bit ridiculous beyond this point. All true, but silly.
I know I’m feeling some effects of the treatment because I drove down to get Tina a slice of Fellini’s pizza and really enjoyed listening to some pop song on the radio. This will be a clear sign to those close to me that something is wrong.
I have to wipe my ass with baby wipes in order to prevent this side effect. I’ll spare you the details.
Tina and I will have to be more careful around each other. A variety of my “bodily fluids” are considered hazardous waste for 48 hours after treatment. Condoms; separate loads of laundry; those sorts of inconveniences.
Ace up my sleeve
As a last resort, I’m going to ask my friend Lane Keener to cook a special meal for me. Lane has literally saved my life on two separate occasions with his cooking. Once in Greensport, AL. Again in Gatlinburg, TN. Sounds exaggerated, but I have witnesses.
Tomorrow morning I will have my first treatment of Avastin and Irinotecan. The intravenous infusions should take between four and five hours for this first go-round.
Here’s my prediction: I’ll tolerate the treatment with very mild side effects, if any; the tumor will quit growing; my brain swelling will subside; and soon the tumor will begin to self-destruct and shrink; then I’ll be able to switch to a less toxic, alternative treatments. I have a lot to accomplish in this life time — got to get healthy quickly so I can get busy living.
A quick note on Novocure: I still have the equipment. Maybe I didn’t give it long enough to work. I continue to read about other people’s experiences with it. But I need immediate results which it was not providing, hence the switch to chemo. Time will tell. I was glad to be free of it’s restrictions though so I could enjoy a weekend of fun and WATER!
Tina and I spent the weekend visiting with friends and family. A family friend allowed us to stay at their beautiful lake house. It was a real joy for me to get in the water since I haven’t been able to do that for over a year. A friend of my brother’s brought his speed boat over. I tried wake-boarding for the first time. I got up on my third attempt. Even though the ride only lasted about 20 seconds before I wiped out, it was a blast.
Thank you to everyone who helped make it a wonderful weekend for Tina and I!
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.
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.
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.
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
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.
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.
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.
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.