Posted on 02/12/2002 7:36:53 AM PST by MrConfettiMan
Last week was a big week for me. I had my first MRI in four months and met with just about every local doctor on my list. Debbie and I also made a trip down to The Brain Tumor Center at Duke University in North Carolina and met with Dr. Henry Friedman, one of the top neuro-oncologists in the country.
On Monday, I went for the actual MRI. I assume the procedure is pretty much the same for the taking images of the brain as for other parts of the body. You're slid inside the tube and they take the first set of images. You're slid out of the tube so they can inject you with contrast. Then they slide you back into the tube to take the final set of images.
When I was slid out of the tube and the technician was preparing my contrast injection he asked me three simple questions. "When did you have your surgery?" "August." "Have you had any radiation?" "No." "Chemotherapy?" "No." He then continued with his work and eventually slid me back inside the tube. I wondered what prompted those questions and figured the questions had to be in response to what he'd seen on the first set of images. My anxiety level shot up. There seemed three likely reasons for his questions: 1) he saw something really nasty on my brain, 2) he saw absolutely no evidence of any surgery or tumor, or 3) he was simply curious.
I left the MRI facility without asking the technician the reason behind his questions (too worried to hear something I didn't like) and with a copy of the MRI films in my hand. I would not look at the films when I got home since I had no knowledge in reading them and could not determine what I was seeing.
The next day we went to see my neurosurgeon to get his read of the films. I was extremely nervous that morning. I told my wife my lower intestines felt like they did on the mornings when I had to fly on an airplane (I'm a white knuckle passenger). Both my neurosurgeon and the radiology report confirmed that the latest MRI shows continued healing of the surgical site and no sign of new growth from the residual tumor. Thank, God. Our prayers had been answered. I breathed a huge sigh of relief.
My neurosurgeon was not recommending any further treatment (radiation or chemotherapy) at this time. I could safely continue with the "wait-n-see" approach of getting MRIs every three months and keeping a close watch on the tumor. He said there's no guarantee but he thought it likely it would be "years and years" before I had to deal with the tumor again (we're hoping I never have to deal with it again).
More importantly, I had a new baseline for myself. During the past four months I had no way of judging whether a brief moment of pain or dizziness or whatever was due to the tumor growing back or something else entirely. When dealing with a chronic illness you begin to realize exactly how many different factors can affect your health on a daily basis: medication, diet, exercise, sleep. A slight change in any one of these things might cause "strange" new symptoms to appear. With my latest MRI, I now knew the symptoms weren't attributable to tumor growth.
After getting the good news from my neurosurgeon, I went across the hall to see my neurologist for a checkup and to discuss getting my seizures under control. It's not exactly rocket science and is usually as simple as finding the right medication for a person. The only anti-convulsant I've been on is Dilantin and since that obviously wasn't working I'm in the process of switching to Depakote.
My neurologist (and the doctor at Duke) finally told me I shouldn't be driving because I'm still having occasional seizures (see two paragraphs down). I subconsciously knew this all along but justified it to myself since a doctor hadn't "officially" told me I shouldn't be driving. (Heck, a week after surgery my neurosurgeon told me I could start taking small drives again, and after all, what is a long drive but a bunch of small ones.) Well, a doctor has finally told me I shouldn't be driving and, well, it's just not worth the risk to me, and more importantly to somebody else.
All states have a rule that says whenever a person has a seizure they are not permitted to drive again until they've been seizure free for "x" number of days. In most cases, it's just a matter of finding the right drug for a person, which stops their seizures. So my wife (with the help of some friends) is now shuttling me around. The sense of lost freedom is tremendous.
[For those of you that hear the word seizure and conjure up images of limbs flailing around uncontrollably (and I was one of you six months ago), my seizures are nothing like that. If you were looking at me, you probably wouldn't even notice I was having a seizure. When I'm having a seizure, my right foot feels a little numb and the fingers of my right hand twitch or wiggle slightly. The entire seizure tends to last less than 30 seconds. The frequency between these seizures is counted in days or weeks. (I've probably explained this before. Sorry for the repeat.)]
Next I decided to return to the MRI facility to explain to the technician the affect his questions had on my psyche. He was obviously bothered that his questions had caused me emotional distress and apologized sincerely. I told him I'd already forgiven him and was only here to prevent a similar experience from happening to someone else. He explained his questions were meant to simply gather information that he could pass on the radiologist. I told him it wasn't the questions themselves but the timing of the questions. I gently suggested he remember to ask those questions before the MRI. (What others have pointed out is these questions should be asked as part of the paperwork you fill out beforehand. I'll be making this suggestion in the near future.)
From there, I drove to the mall and went straight to the food court. Since it was too early in the morning to have ice cream, I treated myself to a Cinnabon. As most of you know, I've been on a very strict diet since early October. I'd managed to lose 20 pounds by mid-December and have maintained a steady weight since. My wife and I decided that regardless of the results, the week around my MRI I'd allow my dietary restrictions to relax a little bit. ("Chubby Hubby. It's more than a way of life.")
Our final visit of the week was to see Dr. Henry Friedman at The Brain Tumor Center at Duke University Medical Center. Dr. Friedman is one of the top neuro-oncologists in the country and is a very laid back, approachable guy. He carefully reviewed and compared my latest MRI with the previous ones explaining his thoughts as he went. He discussed the brain tumor program at Duke and what they would offer me should I choose to sign-up with them.
When we asked Dr. Friedman how much of my tumor was removed during surgery, we were a little disappointed to hear him say only about 50%. (When asked about a 2nd surgery, Dr. Friedman said the remaining tumor cells were too diffuse to make another surgery worthwhile.) When we were doing our initial research in Sep-Oct we saw quite a few retrospective studies that indicated one of the favorable prognostic factors was a gross total rection (>90%) and we've been a little hung up on it ever since, probably because that's what we thought I'd gotten.
I've no idea how different doctors and organizations can give such widely different estimates but I imagine a big reason is it's not an exact science. Frankly, I'm not sure I care anymore. My primary method of coping has been gathering information. While this has been important and helpful for me, I realize learning the specifics about my tumor (amount resected, pathology of tumor cells...) doesn't change anything. The details really don't matter. Whatever will be, will be.
Dr. Friedman agreed with my local doctors that it's best for me to continue following the "wait-n-see" approach. The main difference between Duke and my local doctors is what their initial recommendation would be should the tumor one day down the road "make a move". My local doctors have all said the next line of defense is radiation. Dr. Friedman explains Duke believes the next line of defense is chemotherapy. Duke is having good responses (read that as extending survival not curing the disease) with chemotherapies and they would recommend whatever chemo treatment they are having the best response with at the time.
Some of you might be wondering why I'm not getting any radiation or chemotherapy. Most people recognize, and just about all the literature says that an initial diagnosis of cancer should be met with everything you can throw at it. Hit it early, hit it hard and hit it fast. Within a week of my surgery, I read the same thing. Unfortunately, I soon learned this line of thinking does not apply to low grade brain tumors.
All the evidence suggests my brain tumor is slow growing. The doctor at Duke said I may have had this for 20 years (which would explain a lot). Statistically, this disease is still considered by conventional medicine to be incurable. Surgery is not curative. Radiation is not curative. Chemotherapy is not curative.
I've already had surgery. The first rule of medicine is "to do no harm", which is the primary reason the doctors are not recommending radiation as the potential negative side effects from radiation outweigh its benefits at this time. Lastly, chemotherapy tends to work by destroying fast growing cells, which is why you lose your hair as some of the fastest growing cells in your body are found in your hair follicles. Most cancers contain fast growing cells. Did I mention the cells in my tumor are slow growing? Any questions? :) The available chemotherapy treatments of today would have little to no affect in my case.
I'm getting my next MRI in May. I've not scheduled it yet and probably won't bother for at least a few weeks. I don't intend to write another update until then, if even then. If you don't hear from me (though I'm sure you'll see me from time to time on the forum - though I tend to keep my mouth shut these days), you should assume everything is okay, which it will be regardless of what happens.
I want to thank each of you for being my prayer and good thoughts warriors. I have thought of you often during the past six months and will continue to do so long into the future. Until faced with this tumor, I never fully realized nor appreciated how lucky I was, and am, to be surrounded by so many wonderful and caring people. I could go on and on about how many insightful things I've learned about myself in the past six months. I never understood how cancer survivors could call their illness a gift. I do now.
Note: Please, please, please, I truly hope nobody is using any of the information in my posts to make decisions about their medical care. I am not a doctor. I don't even play one on TV. All matters regarding your health require medical supervision.
And yes, I'm seriously considering writing a book about the last six months. :)
But you got some great news, and you sure deserved a special celebration. CONGRATULATIONS!!!
I'm sorry I missed you when you were hear last time; we have a new grandbaby and are learning to do "three" instead of "two." I will most definitely see you next time you're here -- which I hope won't be for YEARS and YEARS.
BTW, those pictures of you from last week -- well, you looked FABULOUS; that's the very first thing I noticed! You shrunk!
And now I have to go out -- to search for a Cinnabon. (Thanks a LOT!)
Hey! You're the best MrC!! I'm so pleased you've got the time to find out the best course and you don't have to rush in to anything. You just keep fightin' and we'll keep prayin'!! You're gonna beat this thing!
D'OH!
Keep my California pin in place on the map - the prayers will continue for you and your family.
With your outstanding writing skills, a book is certainly in order.
For all the rest of the folks out there, Joe is a wordsmith. He has the ability to put into words a story or information, that allows the reader to feel present in the room with him as he goes through these experiences. I first noticed his "pictures through words" when he would write about FReeping the Clinton White House.
Salute to you Joe, and may God continue to Bless the heck out of you.
bump for your continued good health from your favorite crabby friend
Your story is compelling to read, and I'm so HAPPY for you that the news is GOOD! :))))
I'm glad you mentioned you may write a book, I was thinking reading this last update that this would make a good book, very inspiring for others who find themselves or a loved one in your situation...You are a fine example of how you don't just LAY there and LET things happen to you, It's so important to take an ACTIVE ROLE and not Lose Hope!
Take Care...you're always in my prayers (God knows who MrConfettiMan is I hope!) LOL ;)
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