MrConfettiMan Update: Sliding Into Valleys and Climbing Up Peaks

(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 a month since I last updated you on my condition. As I'm writing, I find myself again in high spirits, similar to how I've felt while writing all the other updates I've posted. However, the past week has been filled with more days down in the valleys than up at the peaks. I went back the other day and reread the previous threads during one of the periods when I was down in a valley. Some of your replies to me used words like "courageous" and "inspirational". I thought, "If only you could see me now." I felt the truth was I only "wrote" courageous and inspirational. If only you could see me during the times when I was feeling the sheer terror or the mental depression one faces when dealing with cancer, you wouldn't be using those words. Though this is the first time during my journey that my time in a valley has lasted for several days in a row, thankfully I started climbing back up to a peak on Wednesday.

After writing an update on September 16th, I spent the next week continuing to research and read information about my cancer. The weekend of the 21st, I finally decided to get another opinion from at least one other institution, which does nothing but treat cancer. I decided to send all my medical information (records, films and pathology slides) to Memorial Sloan-Kettering in NYC.

Early in the week, I called all around town asking to have duplicates of my records made. Then I spent one morning late in the week running around Annapolis collecting the data from the hospital and my various doctors. I managed to collect everything by late in the afternoon on Thursday and a good friend at work helped me package it up to overnight it to SK. I was trying to get it there in time for their weekly Neuro-Oncology board meetings, which are held on Tuesdays. Thankfully, everything arrived in time.

Next Monday, October 1st, I called SK to confirm they received my package, which they had. The secretary told me she would gently push to have my case presented during Tuesday's meeting. Wednesday morning, I again called SK to see if my case was presented. She said it was and she had a draft of the letter they were preparing to send me. She read it to me over the telephone and faxed it too. She informed me a doctor would be calling me to discuss their findings in a day or two. The letter contained a new piece of information as well as their recommendation. The new item was in their pathology report. They noted the cells in my tumor exhibited "a level of nuclear atypism, which is higher than expected for an indolent astrocytic neoplasm." (I'd have to ask the doctor about that one.) Their recommendation was that I could be "safely observed." In other words, get a MRI every 3 months and wait. When the tumor begins to get worse, begin radiation treatments. My wife and I prepared about a dozen questions for when the SK doctor called.

Later that evening during dinner, I picked up the hospital newsletter we received a few weeks ago. "You know," I said, "We really should get moving on some of these classes their offering during the next several months." When we first received the newsletter, we noted several classes of interest. However, we quickly put it aside as we were so busy with other things. While flipping through the newsletter that night, I noted a class entitled "Mind Body Skills for Cancer Patients". The class started that very night and lasted for only four weeks.

I'd already had a long day at work and hadn't slept well the last two evenings. The current time was about 6:10PM and the class started at 7PM. I really didn't want to go because I was looking forward to bumming out with the wife for the rest of the night. I'd already read several books written by cancer patients and they all said a characteristic many "survivors" share is that they're willing to do whatever it takes to beat their illness. I quickly recognized this moment as something I should probably be doing to help me deal with my illness. I felt if I didn't at least try to attend the class, I might set myself down the road to rejecting other survival opportunities that were placed before me. My wife offered to call and see if there was room in the class, which there was and she signed me up. I left at 6:30PM, managed to arrive within minutes of the start time, and soon met a person who I've come to think of as my guardian angel.

There are only four "students" in the class, two men and two women. The other students are at least a generation or two older than me. The other male is a 63 year-old gentleman, also named Joe. He was told he had 18 months to live and it's now been 10 years. His attitude and wisdom are simply awe-inspiring. All through that first class I kept thinking, "This man was put here for me." At the end of the class one of the women came over to me and said, gesturing towards the other Joe, "You know, I think he's going to be really good for you." Simply put, he was and is good for me. He's a large part of why I managed to pull myself up out of the valley. When the last class ends, I will be asking him if he and I can stay in contact with each other.

The next night, Thursday, my wife and I (who live in the Annapolis area) drove into Washington, DC, to attend a monthly brain tumor support group meeting. It's the closest group directly related to my condition. (We're now thinking of trying to start a brain tumor support group locally.) Unfortunately, the meeting format was not the go around the table and talk format as they had a guest speaker. He was a pharmacologist from a local hospital and answered many questions from the group regarding their medication and treatment options. The meeting lasted about 90 minutes and several long time members of the group came over and talked with us before we all eventually left. We will be returning next month.

On Friday afternoon, the doctor from SK called and thus began my descent into the valley. It wasn't so much what he said as it was how he said it. He was a little too blunt for me and tended to talk in absolutes. For example, "the tumor will grow back no matter what you do." Okay, yeah, sure. Statistically speaking the data says so, but he can't possibly know that. I recognize that's more than likely to be what happens but it's also possible (no matter how slim the chance might be) that it won't grow back. There is no such thing as false hope and no doctor should be denying a patient of hope. I got the feeling from the doctor he was pretty certain this disease would one day get the better of me and that it is was only a matter of time.

The main reason for them suggesting I take the wait-n-see approach was that radiation to the brain tended to be a one shot deal. They felt since I was feeling okay, I shouldn't "waste" my one chance at getting radiation now. He said it would probably be several years before the tumor was likely to change again. I asked if the "nuclear atypism" they noted indicated my tumor was more likely to one day mutate to a higher grade of malignancy. He replied, "Yes, that is something we sometimes see with more aggressive tumors but you shouldn't worry about it."

I think the biggest reason the SK doctor upset me so much is because prior to hearing from SK my doctors were all leaning towards taking an aggressive approach and getting radiation treatments. Now I'd been told by one of the best cancer institutions in this country, that I should simply sit back and wait for my cancer to grow back. Maybe you've heard that I'm not the kind of guy that sees a problem and likes to do nothing about it. There only seemed to be two choices: radiation now, or radiation later. I was desperate to find a third option.

That weekend we made another visit up to NJ to visit with my mom and grandfather. (I was a little nervous. The last time I was there, I'd been diagnosed with a brain tumor. :) Several members of the family were meeting there on Saturday to attend a mass in honor of my grandmother who passed away a couple of years ago. It was wonderful to see everybody, especially my 4 year-old nephew and 18 month-old niece. Overall the trip was uplifting but not enough to pull me out of the valley.

On Wednesday, October 10th, I met up with Explorer89 to go over to a friend's house for lunch. He just had knee surgery and was recuperating for the next couple of weeks. We laughed about how his recover from knee surgery would be much longer than my recovery from brain surgery. (The irony of course is that my condition is so much more serious than his is.) It was at this point that my climb out of the valley began. As I drove Ex89 back to work, we unexpectedly ran into some old coworkers of mine. Seeing them had an amazing effect on me and further boosted me up towards the peak. I finally made it to the peak that night while attending class with my guardian angel, Joe. I explained to everybody what transpired during my conversation with the SK doctor. Joe's response was like a hand reaching over the ledge and pulling me back up to the peak. I've been on that peak ever since.

Thursday, I had my second post-op MRI. I heard from my doctor on Friday and he said the final report from the radiologist wasn't available so he couldn't tell me what percentage of the tumor the neurosurgeon resected. The good news was that it was apparent the area of resection was healing up fine and nothing looked "worse". Tomorrow, my wife and I are going to Johns Hopkins Hospital to see a radiation oncologist to get another opinion on my treatment options. I'm also thinking about sending my records to another cancer institution for their opinion in an attempt to find that elusive third option. Finally, I'm going to try to track down the doctor considered the "foremost authority" on treating low grade, astrocytomas. (I have no idea who that is yet.)

Other Tidbits: I started talking to the cancer in my brain while I'm alone in the car. And let me tell you, I let the expletives fly. As I'm going to sleep at night, I repeatedly say the following: "My doctors and I are going to kill all the cancer cells in my body." I started eating healthy for the first time in my life. Glucose (i.e. sugar) is a cancer cell's best friend. If you avoid sugar, it eliminates about 95% of what's on the shelves in your local supermarket. I picked up a book recommended by a fellow freeper and have been adhering to its recommendations for a little over a week. It's been a little hard to find foods with much variety and surprisingly I don't find myself missing the old days at all. (Except for breakfast. What does one have for breakfast when not eating cereal? My sister-in-law sent me a box of Homer [Simpsons]'s Cinnamon Donuts cereal before learning I had changed my eating habits. Oh, man. It's been tough not opening that one!)

I'm sorry for the lengthy update. It helps to write. I appreciate all the support and prayers you've been sending my way. I think of you guys often and it's very comforting to know how many of you are out there thinking about me.

Making Miracles Happen
by Gregory White Smith & Steven Naifeh
ISBN: 0-316-59788-0

Beating Cancer with Nutrition
by Patrick Quillin with Noreen Quillin
ISBN: 0-9638372-8-1

Good luck with everything. I work with cancer patients, you're right about attitude having much to do with everything depending on the type of cancer of course.

That's interesting about the sugar being cancers best friend. Sugar seems to do so much harm to people. Diabetes, Teeth...obesity.

Thank you for the detailed update. How about letting us NJ FReepers know about your next visit to the Garden State? We'd love to give you some (FReeper) moral support. You continue to be in my prayers.

You truly are in my prayers - - have you thought about Cleveland Clinic? They did wonders for me in 1992- - not brain cancer, but a head & neck cancer that was squamous cell. I'd never smoked or drank, but according to my ENT, I had the tonsils of a 60 year old smoker. If you desire, I can give you the name and and phone # of my oncologist - - its 9 years old, I've kept his card, and the nurse from his office still calls me to check up to see how I'm doing (I moved from Northern Ohio to Northern VA in 1994).

Thanks for update, MCM. I still remember what this "sheer terror" was all about. I pray with you as much as my family and friends prayed for me.

MrConfettiMan, I still admire your attitude and courage. Given this situation, a few days in the valley are understandable, but I'm glad the Lord sent Joe to help you & give you courage. I hope that over the next few days, your treatment options become more defined. The "wait & see" option would bother me too; it's like having something hanging over your head for the next however many years.

WOW! Great update. It sounds to me that you have had all positive news. I can understand your dilemma about which road to take on the treatment! I am sure that once you reach everyone you want to on this that you will make the best decision. And, I am positive that you will be A-OK, 100% perfect when it is all said and done.

We should have guessed that the angry guy who stood alone on that first day at the White House with a "Fire the Liar" sign would not stand still for this assault on his body by a few measly "terrorist" cancer cells! As Dubya would say, "You're gonna smoke 'em out"!

Thanks for the update, Joe. You're in my prayers. I'm glad to hear you're seeking out medical experts at the finest hospitals, and would encourage you to avoid the snake-oil "non-traditional" treatments, no matter how persuasive their proponents may be. Non-traditional treatments (herbs, mostly) killed my aunt, who irrationally refused to see a doctor about her very treatable form of cancer.

You are still in my prayers and I continue to lift you up every day to the Great Physician. May God continue to give you and your entire family strength through this ordeal

"This man was put here for me."

MrCM, trust in the Lord: He will always provide you with what you need. I hope that, in addition to your positive affirmations, you are praying for His light and grace. I know I am, MrCM -- praying for you, and pulling for you. Thank you so much for the update -- it's been a while, and I've been thinking of you. all my best, and get well -- bb.

A friend of mine was diagnosed with grade II astrocytoma over ten years ago, and he's fine. He had top-notch doctors on his case, and maybe that is part of the reason. There are significant differences in the quality of care between different cancer docs, I have little doubt, so stay on top of that.

Please don't apologize for the lengthly report, MrC. It was great to hear from you again, and it's so wonderful you've found someone like Joe to give you inspiration, as well!

When you have time, come visit the Canteen again - sometimes it gets a little rowdy and we can use the MP. :^)

You ARE courages, you see you faced what had to be done and did what you had to do. That is not easy a lot of the time do to. We are all fortunate to know you and prayers and positive thoughts for you have and still will be done.

Thank you for the update and God Bless you.

I'm praying for you MrConfettiMan.

You may want to listen to what Dr. Lorraine Day did to defeat breast cancer.

I use to listen to her on the radio a long time "before" she found out about having breast cancer...at that time she was warning all of us about Aids & how to protect ourselves from it. If you're interested here is her web site.

Open letter

Dr. Lorraine Day

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