Necrosis
Irinotecan / Avastin Milestone
Yesterday I had an MRI — the first one since going on the Irinotecan/Avastin infusion treatment plan two months ago. Specifically, I’ve had three doses of Avastin, four of Irinotecan.
For now, we’ll say the news is good. I’ll post more details tomorrow after our trip to Duke’s Preston Robert Tisch brain tumor center.
My last MRI was done at Northwestern in Chicago back in August. The radiologist at DeKalb Medical here in Atlanta apparently had a hard time comparing yesterday’s images because equipment and techniques may vary. There appears to be some progress but specifics are vague. The tumor measurement has increased, but it appears to include a lot of dead (tumor) cells — Necrosis.
Hopefully the brain cancer specialists at Duke will be able to better interpret the results. I need objective criteria to help decide whether to continue poisoning my body with chemo and Avastin or not. This is poisoning my whole body — not just attacking tumors. An impatient man could lose his cool wading through these precarious waters.
Other
The missing Kebostock banner has appeared. While some may claim it was stolen, others might say it took a road trip with friends.
I send my Love and Thanks to the incredible network of people who help support me. I compose a blog post in my head every single day. I work through my thoughts as though I’m talking to you. It’s helpful to me. Luckily, I’m wise enough not to publish all those random thoughts.
[edited to remove excessive rambling]
Guest Post from Caregiver/Spouse
I couldn’t let today go by without telling everyone that today officially marks the 14-month anniversary date from Ken’s seizure. Why is this information important, because Ken’s surgeon boldly let me know that the survival time for Ken would be 12-14 months. Of course we are not paying attention to statistics as Ken is a statistic of one and I’m sure faithful readers of this blog can attest to this fact.
Each and every day/moment I’m amazed by Ken and it’s hard to explain what I mean by this without sounding like a Hallmark card so I’ll spare you the details.
I wanted to also thank each and every one of you who read this blog, have donated money, food, etc. or attended the Kebostock event.
Please join me in celebrating this milestone with Ken.
Tina
Six
I’ve been critical, judgmental and one-sided in my latest posts. But I have now reconsidered my position on some things, such as salutations, generalizations and the effectiveness of universally recognizable emoticons. Thanks to those who shared an opinion. Sorry if my tunnel vision disrespected anyone. I think I should just keep this blog focused on my wellness updates. I’ll try to tone down the commentaries.
But first another apology. Sorry to the few ladies on my street to whom I’ve shown off my blood drain bag. It didn’t occur to me that you may not have been interested in seeing that. It’s kind of gross.
E. coli
We heard from the infectious disease doctor today. My infection is from basic E. coli.
Good, because it’s easy to treat and I am already taking the right antibiotics for it. And, there may not be anything wrong with my appendix.
Possibly bad because Avastin is probably the cause. I will discontinue using it (at least temporarily). The abscess caused by this bacterium may be from a gastrointestinal perforation. (Don’t search the Web for more details — it ain’t good). But, these are still just assumptions. More information will be revealed to me at my follow-up appointments on Monday.
Caregivers
Tina manages my wound care with vigor and tenacity; without fear or hesitation. She takes care of everything. And Mila, tends to me just as diligently. Maybe that’s the female nature. They support each other too, which is good because I’m quite unreliable and selfish.
Drugs
I’m weakened by this injury and the drugs used to treat it. Synthetic drug treatments may be helping me but they are definitely hurting me. I wish I could just say no to these drugs1.
Maybe nature offers better hope. Cannabinoids keep coming up in cancer research2 — not just for the treatment of nausea and appetite, but to kill cancer cells. Many people hold some power to affect the repeal of marijuana legislation so more research and clinical trials can be done. It is my hope that all those people begin to use that ability now to implement change (even in Georgia) or else become intimately affected by the desperation of terminal cancer.
Conclusion
Most times that people see me – I’m a One. Lately Six has been common. I’ve had my fluctuations up to Ten though. May you be Zero. Goodnight. (Edited to add: I’m talking here about physical pain, not emotional or mental state. It was a reference to my previous post criticizing the standardized pain scale.)
Footnotes
- Pharmaceutical drugs I’m referring to include: hydrocodone, bevacizumab, irinotecan, dexamethasone, temodar
- There are probably better sources to reference, but this seems like a good start for the disinformed: New Study Adds to Research Showing Marijuana Could Stop Cancer, Mitch Earleywine, September 24, 2012
Hospitalized
All day Monday, I was couch- and bed-bound from severe pain in my lower right abdomen — right where my appendix is (or should be). My body temperature teetered around 99-101 degrees. Luckily I had some Hydrocodone left over from my craniotomy and it helped me make it through the night. This is the same pain feeling that happened two weeks ago after the second infusion. Last time we just made assumptions about it being a urinary infection. I took antibiotics, but the blood culture did not confirm an infection, so we assumed it was a kidney stone and that I passed it. I HAVE had a stone a long time ago and the pain was really that bad. It was at least three days of agony.
So, today, in anticipation of another painful episode, Tina took me to the doctor’s office for routine blood work. It was decided that I should get a CT scan to determine what’s going on. The CT scan was not very useful. It showed fluid — that’s it. In fact, it was not possible to even make out the appendix.
So, I was admitted to the hospital this evening. I tried to send Tina home to get some rest, but of course she refuses. It’s the couch for her tonight.
Tomorrow, I will get a CT-guided aspiration/drainage. It’s been a long, rough day, but at least I’m still here to talk about it.
Are you in pain?
Some GOALS were written on the whiteboard of my hospital room. So, what is the nurse’s number one priority?
Pain level < 10
That is, to keep my pain level less than a 10* (see chart)
Take a look at their chart. I think it could use an overhaul. The expressions of the levels are horribly inaccurate in my opinion. Think about “severe pain” (#6) and take a look at that face. This guy looks despondent at best. Worst pain imaginable (#10) looks like a tween going through his first heart break. One’s first pubescent break-up could SEEM like the worst pain imaginable, but come on. This face does not represent excruciating physical pain.
So I asked the nurse about this goal. She asked what pain level I would like to be medicated for. Really? Does anyone answer something other than NO PAIN (#0)?
My pain is now under control. Hopefully tomorrow, we will be able to figure out what’s wrong with me.
Kebostock Countdown
This gallery contains 27 photos.
All is well on the health front. So far so good on round 2 of chemo. This post is mostly an update on the upcoming benefit event.
Second Infusion
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.
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!















