Dazed and Infused
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.
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.
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.
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.
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.
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.
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.
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.
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.)
- 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
Released from the Hospital
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.
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.