Posted on 11/16/2001 1:26:55 PM PST by MrConfettiMan
(For those who are reading about this for the first time: Back in August, I was unexpectedly diagnosed with a brain tumor and four days later had surgery to remove it. The biopsy came back as a grade 2 astrocytoma, a low grade, slow growing, malignant tumor. In short, I have brain cancer. At this point, I'm in the progress of deciding what follow-up treatment to pursue since my surgery.)
Hi, everybody. It's been almost five weeks since I last posted an update and while a lot certainly has happened, my situation hasn't really changed very much. Which when you think about it, is a good thing. When last I wrote, I'd spent a few days down in the valley due primarily to my conversation with a doctor from Memorial Sloan-Kettering who had reviewed my case. It wasn't what he said as much as how he said it. I managed to climb back up to the peak just in time to get my 2nd post-op MRI on Thursday, October 11. On October 16, I posted a reply to that same thread detailing the events of our visit to see the doctors at Johns Hopkins Hospital.
At the end of that reply, I told you I was planning to send my records to the MD Anderson Cancer Center in Houston, TX. Well, I procrastinated for a few days. By the time I got around to calling MD Anderson, it was apparent I wasn't going to get my slides back before the next appointment with a local doctor. I had a couple of appointments scheduled during the next week with some local doctors and knew they'd be anxious to see my latest MRI. I put MD Anderson on the back burner.
On Friday, October 25, we again met with my radiation oncologist. Though I told the doctor I still hadn't made up my mind regarding the radiation now or later issue, I felt he spent most of the appointment talking as if the decision had already been made. He seemed to assume that since both MSK and JHH had suggested the "wait-n-see" approach, it was what my decision would be. We also looked at my latest MRI from October 11 and I was shocked to hear him say he thought Dr. Ducker removed about 50-60% of the tumor (which would not classify it as a gross total resection). Unfortunately, hearing this sent me into a mental tailspin and I wasn't capable of functioning very well for the remainder of the appointment.
In retrospect, this appointment was not one of my finest moments. When the doctor persisted in talking as if the radiation now or later decision had been made, I should have made it perfectly clear to him that was not the case. Also, it definitely would have been better if I didn't fall into my mental tailspin. After all, this same doctor told me the day after my MRI on the 11th that he didn't feel he was a good enough radiologist to read my MRI images when I called him for the results. I should have reminded him of his own words from two weeks ago.
Saturday, October 27, we went to visit some old friends in Fell's Point, MD. My first job out of college was working for Bendix Communications Division in Towson, MD. I worked there for about two and a half years and made a few lifelong friends. Back then, we used to go to Fell's Point and hold an event called "Beer Golf". Teams of four, nine bars (they're the holes, hence the golf theme), 20 minutes per bar, 10 minutes between bars…team that drinks the most beers wins (or loses, depending on how you look at it). We used to really get hammered. These days, Beer Golf is more a social event than a drinking one. It was great to see everybody but I think it was better for them to see me. Afterwards, Debbie and I stopped at Sabatino's in Little Italy for dinner.
On November 1, we visited with my neurosurgeon. As the lone voice still presumably calling for early radiation, I was very interested in hearing what he had to say. However, he soon told us that when he said early radiation he meant early as in 6 months after surgery (not a few weeks, which is what we assumed). He said he was interested in seeing my 6 month post-op MRI and then would make a recommendation about any radiation treatments. Upon viewing my latest MRI scans, he said he felt comfortable it could be called a gross total resection.
The other interesting thing he said in response to a question was he thought I was an excellent candidate for some type of radio-surgery. This is typically a single, focused, high dose of radiation at a specific tumor location in the body. He reiterated what the radiation oncologist told us last week that the Annapolis medical community was getting a radio-surgery device called a Novalis. He felt if I could safely wait until that new machine was available, it might be a big advantage in my case. The Novalis device is in operation at UCLA and Harvard (plus probably other locations).
This information leads me to ponder some thoughts. I'm wondering why this device wasn't recommended to us already? Just because the device isn't currently available locally doesn't mean we won't go anywhere necessary to get me the best treatment. I think many of you can read between the lines of these threads and recognize how much research my wife and I are doing to fight this disease. Given how much research my wife and I are doing and how many questions we're asking, it's scary to think how many opportunities might not come up during discussions with our doctors simply because we haven't asked the right question. Ugh.
I'm still on my diet. I've managed to keep sugar, dairy and starch intake to a bare minimum for 6 weeks now. I haven't had beef for the same amount of time. The rule is simple. If the food isn't of nutritional value, it's not eaten. I've lost 15 lbs. On Monday, I have another appointment with my regular doctor where he'll do another blood work-up on me. I'm curious to see how well the numbers compare to the blood work done back in September. If there's no significant change, I'm going right home to have a bowl of Homer Simpson's Cinnamon Doughnut cereal.
The last couple of weeks I've just been more or less going with the flow. It's starting to sink in more everyday that the quick solution we're always looking for in this country (and that I was hoping to find) just going to happen in my situation. I realize the journey ahead is a long one. That's okay. I know I'm not alone. We've currently put MD Anderson on the back burner. Our next step is to contact UCLA. A freeper has an inside source to their neurology department that we plan to exploit. I've also joined a brain tumor mailing list. The people on the list are extremely knowledgeable and Dr. Ed Friedman at Duke seems to be another person we should contact.
A couple of hours after posting my last update, I received a telephone call from one of the original members of the DC Chapter. Aloyse was a lurker back then and today she's still a lurker. She ran across my thread and called to tell me that I would be in her thoughts and prayers. She also recommended a book to me by Bernie Seigel called Love, Medicine and Miracles. Bernie is a retired surgeon who over the course of his career came to realize the incredible capacity for healing we each have within ourselves. He's written several books and years ago started a group called ECaP, Exceptional Cancer Patients. Anyway, I really connected with the ideas in this book and in many cases felt at various places in the book that he was talking about me. I highly recommend this book to those fighting a chronic illness. Thanks, Aloyse.
Finally, I'm planning to purchase two paper foldout maps, one of the USA and one of the world, and a whole punch of flat pins. I'm going to mount the maps to some corkboard and then place a pin wherever there's somebody praying for me or keeping me in their thoughts. If you're willing to post your location with your reply, I'll be glad to stick a pin in there for 'ya. If you prefer freepmail, that's okay too. If you're wearing your tinfoil hat, that's okay. I'll stick a pin near Area 51 for you. :)
I don't expect you'll get another update from me until after the holiday season, by which time I will have become an Uncle for the third time. (By the way, Hank, the wife and I still trying are best. ;) My next MRI isn't until Jan/Feb and we'll take it from there. I'm in the early stages of working on a web site where I'll be keeping an account of the road I'm traveling. It's really not ready for prime time but have a look if you like, bookmark it and check back in a few weeks: Joe's Journey - Failure is Not an Option".
You have come to the realization that I also faced in my medical struggle. Even if you have to physically restrain that doctor from leaving the room before you can think of the question to ask, do it. You may not ask the right question, but ask it anyway because you never know where it will lead and it may actually lead to the right question eventually.
You can add a pin from a little town about 40 miles north of Dallas. I'm sorry you're having to go through this. Hang in there, don't give up, and don't rely on the doctors to tell you what there is to know. You and your wife are doing the right things. Keep doing them.
I was really happy to see that you posted today because you were in my thoughts and I was wondering how you were doing. I was about to do a search for you when to my delight I found this thread on the front page.
Your quest for the best treatment should be inspiring for those who are willingly suffering through mediocre medical care. Never give up your search.
It took me four years and seven doctors to find a doctor to give me an accurate diagnosis for my particular illness.
I really appreciate your recommendation of Dr. Seigel's book. I am going to buy it as soon as possible for a very dear friend of mine who was recently diagnosed with cancer. Thank you and God bless you.
Sarah is now 2 weeks past her marrow transplant, so far so good!
Rodger
Orange County, CA
God speed Bro.
Please check out this new development: Microscopic 'smart bomb' kills cancer cells.
BTW The picture of you and I at the HMR hangs proudly on my FReeper wall. We luv ya.
You can stick a pin in DC and LA for me -- being bi-coastal and all. hehe
Godspeed.
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