Released from the Hospital
CT Guided Aspiration Drainage
Blood bag strapped to thigh — My latest fashion accessory, just in time for Halloween.
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.
Conclusion
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.
Post Chemo Update and Site Revisions
Medical Update
It’s been four days since I received my Avastin and Irinotecan infusions. So far, it has been very tolerable. I’ve experienced some times of being very tired where my body felt like a lead weight and I slept or napped more than usual. No nausea or any other ill effects to report. If this therapy works and I can continue to tolerate it well, then I’ll be very happy. I have to give credit to Tina for making sure I stay hydrated, eat the right things and walk and exercise.
Site Revisions
We now own the domain name, glioblasted.com. It’s just a little easier to type glioblasted.com into a browser instead of glioblasted.wordpress.com, but either URL will work. To be honest the decision kind of had to do with branding. Since I worked in advertising and web strategy before my cancer, I guess it’s kind of ingrained in me to think like that. One difference is that usually you WANT your site to get lots of page views. In my case it just means way too many people are affected by this horrible cancer.
In the beginning I wasn’t sure what the purpose of this site would be. It’s more clear to me now so I’ve begun to go back and edit some of the pages and posts in an attempt to make it easier for the disturbingly high number of people affected by GBM to distinguish useful information from my introspective ramblings.
Event Update
The event plans for September 21 and 22 in Gadsden are coming along great. Some fantastic sponsors have been very generous, donating venues and services as well as items to auction or raffle off, including: music equipment, artwork, memorabilia, printed t-shirts and more. But the main attraction will probably be the bands that have volunteered to perform and getting to reconnect with old friends and my hometown community to celebrate life.
I’ll post more details soon.
Happy Labor Day weekend!
Avastin/Irinotecan Infusion #1 Progress Report
Medical Update
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.
Side Effect
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.
Preventative maintenance
I have to wipe my ass with baby wipes in order to prevent this side effect. I’ll spare you the details.
Limited contact
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.
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.
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.
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 