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".
Put a little pin in the heart of Texas for me--just a scose NW of Austin.
Be well. gorush
Mr. Confetti Man, please continue with your diet. Also, and this is the most important part, don't accept this disease. Ask for God's healing and believe you will get it.
When you are believing for a healing and people come to you with negative reports, don't accept them into your spirit. YOU say to your OWN spirit, "I don't receive this. This isn't mine. I'm not going to take this into my spirit. I'm standing on the Word, and I believe I have received"..
STAY POSITIVE...I'll pray for your strength to keep that attitude.
sw
I admire your resolve and the fact that you reach out to a cyber community. Hope you have plenty of flesh and blood friends and family close.
Put Ottawa Canada on your map, please.
Keep us posted.
Working in Moses Cone Hospital in Greensboro, NC as a Department Secretary,
I had done my homework in the Hospital Library and knew what he would find,
any of which terminal.
Prior to that, I had worked for a General Practitioner as his ONLY help for two years,
and I knew how difficult it is for a physician to convey bad news.
Stopping him (16 years my junior), to spare him that task, I said I knew all he could do was hold my hand while I went down the tubes, but that it was all right!!
That I knew The Great Physician and it was HIS Timetable, whatever that might be!
The teaching physician who had sent me to him, and had treated me for several years, told my husband to expect to bury me within a year, and more than likely 4-5 months, judging from my condition.
HA! While within hours the hospital grapevine had broadcast the news and the professionals kept watching for signs of deterioration and depression, the Lord kept me sailing along those corridors, cheerful and in-their-face!
He knew it would surprise them, depending upon black words on white paper called texts - and was showing them my outcome could be altered by Him.
I am labeled a brittle diabetic (3% qualify for this dubious honor) and even with nine years of being on an insulin infusion pump, nothing changed the fact I remained uncontrolled, and was sensitive to both insulin and exercise, including housework.
I also experienced commonly 5-10 insulin reactions every week; often 2-3 in a single day, many with readings of 30 and LESS. (and never had to present in ER!)
Yet I almost never missed a day of work - never got 24-hour things or the virus of the week,
as did all those around me...never got infections, nor lost my vision, as would be expected.
One day with a problem with the tubing for the infusion pump, I could not drive home 20 miles to replace it...that afternoon had labs drawn at my doctor's office prior to seeing him two days later.
He, in fact, stopped to chat with me while it was being drawn, and I went back to finish the other hour and a half of work.
The next morning he called me at work to ask, "Margaret! Were you aware your blood glucose was 1,095??!!!
Told him, "Well - it was a kind of uphill day.."
God does indeed decide the number of our days, and gives us strength on those when ours lags.
I was able to work 9 more years before going on disability, and am now 16 years out from the 'Terminal Diagnosis,' still not on dialysis, cheating death often.
Just two weeks ago I had two nights with severe insulin reactions with readings below 25 -
the meter cannot determine the actual figure below that.
Gives real meaning to the prayer, "Now I lay me down to sleep--."
I know His angels watch over me, to wake me when I am defenseless.
Bottom Line is I still am going strong and steady!
To God be the glory!!
I like the idea of the web site and have put it to my "favorites" list to check in periodically.
Salmon, Idaho, here.....about where the big of the state meets the little of the state!
Tell Debbie she's in my prayers, too.....I know what it is to be the support spouse. :)
And.....never leave God out of the equation....his Son didn't die just to cover our sins, ya know.
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