Recently, I’ve had more frequent headaches in the morning & other symptoms, so we moved my MRI from mid-May to yesterday.
Results are in:
There is no new swelling of the brain. The tumor has increased slightly in size — nothing unexpected or concerning, really. In a way, not bad news. We will likely discontinue chemotherapy. We are going to move forward with the Ketogenic diet hoping that it will help reduce tumor size. My oncologists don’t expect this to happen, but we are encouraged by studies and testimonials we have investigated. Here’s a video for anyone interested in more info:
Dining with Chefs, Loosening Restrictions
Over the last year or so, I have become friends with my local butcher/fish monger, Lynne Sawicki, owner of Sawicki’s Meat Seafood and More in Decatur, GA, when I redesigned her website (http://sawickisfoods.com/). She offered to cook for Tina and I in our home and we took advantage of that offer last week. We decided that we could loosen the self-imposed ban on meat and we ate lamb and some yummy desserts, not worrying about sugar. I’m back to avoiding sugar, but the ketogenic diet will recommend that I do eat meat and fats and oils. Lynne has worked in some of the best kitchens in Atlanta, including Partner’s, Indigo, Alon’s, The Flying Biscuit, Nava, Floataway, and Bacchanalia. It was a fantastic meal and evening.
The Meal Train has been a very helpful resource for us. Since I’m the family cook, when friends and neighbors sign up to bring us meals, it takes a lot of pressure off Tina and I worrying about what’s for dinner. Since I am Sawicki’s web developer, I have to take this opportuniy to promote them and their excllent Prepared Meals To Go. More information here on her site: http://sawickisfoods.com/prepared-foods/http://sawickisfoods.com/prepared-foods/.
Too Much Information / Full Disclosure/Too much information / No Time for Embarrassment
Since I’m sharing my story, I may as well share it all without reservations in case it’s helpful information to others. Rushing to make it to the toilet last week, I was unable to make it and crapped my pants. Not a pleasant story to share and we don’t think it was specifically related to my tumor but I suppose these things can happen. The MRI revealed mild ventriculomegaly, slightly increased from the prior scan. This can cause incontinence, abnormal gait and dementia. This pesky tumor is becoming a nuisance.
Almost daily I have bouts of weakness and shaking where I need to sit or lie down to avoid falling. The steroids make my muscles weak. These are quite scary for Tina. It is difficult and tiring for her to move me to a safe place to land. I had an episode tonight which she thinks was a seizure, which maybe it was, because I was unresponsive and shaking while lying down after trying to go for a walk, but I tend to not want to admit that I may be having seizures.
“The Foulness is what I have termed an unpleasant taste/smell sensation that I experience daily. It’s an unpleasant, metallic taste/smell. When taking chemo, a common side-effect is that taste may be affected. This Foulness of which I speak is not when I eat something. It appears almost anytime. It could be triggered during a walk or anytime. It’s very unpleasant.
My blood counts are good. My spirits are high. My support network is incredibly helpful and uplifting. I can’t complain too much.
I will begin the ketogenic diet soon. I may have the option to receive compassionate use of CDX-110, which is a drug in clinical trials. I would not be part of the clinical trial, but may be approved for compassionate use. This is a drug that we have had our eye on for quite a while.
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.
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.
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
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.)