No Whole Brain Radiation

Hi - sorry that I have not updated the Blog lately - let's just say, that life has gotten in the way. And, for the most part, that is a very good thing! Life in itself is a good thing. It is nice to be alive. "Having a life" is a good thing as well. It is nice to be back to some "normal" activities. But, as we all know, even the normal activities can be time consuming and stressful. For those who have not been updated, I have been rather busy - house floods, dear friend's wedding and reception, out-of-town guests, celebration, and lots and lots of doctor's and therapy appointments.

A lot of people have been asking, and I am sorry that it took me so long to let you know my decision, but after the consultation with the Radiation Oncologist, I wanted to consult with my Oncologist. Then, of course, the Oncologist sent me to see a Neurologist. So, eventhough my decision did not change, I wanted to be certain of my decision before broadcasting it to everyone. I have decided NOT to have whole brain radiation. It was a tough decision. So many risks involved on both sides. At this time, with the cancer gone, I am not willing to take the risks of having the radiation.

I will give you more updates later. But for now, know that all things on the cancer front seem to be going well - I will be having another brain MRI in late November.

For now "Go Ravens" and keep sending the positive thoughts and prayers!

FACE BOOK - A Good Thing and a Bad Thing

I have mostly thought that Face Book (FB) is not a good thing. Way too much information being shared with way too many people - most of which are not your friends! I do have a FB page. I joined a couple of years ago when a friend from high school, Class of 1977, one year ahead of me, was meeting with some other friends from the Class of 1977 for lunch. I went to the luncheon and had a nice time and reunited with a few old friends. All the women in the group had FB pages and wanted me to have one so that I could share some photographs from high school with them and then I could also view some of the things that they ad posted. So, soon thereafter, I joined FB and uploaded some pictures from high school, found some old friends and shared a few good memories. All of which, were the good things about FB. FB makes it to easy to share information and photographs with a large group of people all at the same time and that group of people can enjoy or ignore your information, at there own pace and time. It is also a nice way to find and connect with friends and relations from long ago or far away. We have all heard of some of the bad aspects of FB as well. There are those who use it to burglarize houses or spy on former friends and/or enemies. There is also a lot of people that use FB to promote themselves, their businesses, their political views and/or beliefs and agendas. I find it interesting how many people get hooked on the FB games - virtual farming and warring is all the rage in some circles. I also find it interesting to see which people are on FB all the time and which ones barely ever post to their page. I am sure that eventually, their will be syndromes named for all the various types of FB people. I have recently had a few good experiences due to FB. One, was being "found" by a friend from my old Northeast Baltimore neighborhood who now lives in Alaska. Yes, the young girl that I used to walk to the library with and buy ice ream cones with at the local Highs store, now lives in Alaska! I have not had any contact with her in approximately 25 years, so it was rather exciting and interesting to hear her story and know that she lives in Alaska. The other nice thing that FB did for me was reunite me with another old childhood friend from my Northeast Baltimore neighborhood. That friend has been struggling with health problems for the last few years and has also been fighting cancer for a couple of years as well. We conversed a little on FB and he mentioned that there was a neighborhood reunion coming up. I knew about the reunion and probably would not have attended - too much to do, too chilly - might rain - I had lots of excuses. Well, I attended only because my friend with cancer had checked himself out of the hospital just so that he could be at the reunion. After hearing that, all of my excuses seemed silly. How could I not attend? My chemotherapy treatments are over. I am feeling stronger every day. My friend has endured so much - surgeries and procedures and more surgeries and more procedures. It was bittersweet seeing him, he was not the young, handsome, vibrant, long haired hippy that I remembered from the neighborhood. He was now a 50 year old man battling cancer with all the side effects that come with each and every treatment. But his eyes shone with the same brilliance that I remembered from our youth. He was so excited to be there and to see me. He was so upbeat and had such a positive attitude that he seemed to glow. I am thankful to FB for reconnecting me with this friend. I guess that like all things, FB is good and bad.

Driving Test - Yes, I passed.

Okay, if you read the previous stink bug story, you know that I took the driving test and was rather nervous. After getting rid of the stink bug, I calmed down and parallel parked. Yes, I did it in 1.5 minutes (I was allowed 3 minutes) - smoothly and efficiently. I was very proud of myself. I performed the three point turn (or turn-around, as they call it now) and completed the remainder of the course. After that, we headed out to the open road and I even had to drive through a traffic circle (aka roadabout). I hate roundabouts! I did very well and I only lost 3 points throughout the whole driving test. (I know that I lost one point for failing to signal when pulling out of the parking space, but not sure about the other points). I was so excited to pass - I am not sure why I was so nervous. I didn't exactly do a happy dance in the parking lot, but I did flash a big thumbs up to my dad who was sitting on the bench waiting for me. I am so very happy to have some freedom back - it is very annoying to have to ask someone to take you somewhere - especially when your very own car that you are capable of driving, is sitting in the driveway staring at you!

PS: According to my dad, the grouchy examiner failed two people in a row! Glad that I didn't get him.

FUNNY STINK BUG STORY (Involves Driving Test)

So, I was a nervous wreck and was at the MVA to take my driving test. I don't know why, but I was super worried about the parallel parking. It was hot and me and dad were three cars back in the line and things were moving slowly. The air conditioning was blasting. Dad was getting antsy and we were watching as each Driving Examiner came out and took a person through the test. All the waiting ws making me a little more nervous. The first examiner was a rather large woman with a big, happy smile. I wanted her to be my examiner, but she wasn't. She did a quick check of the first car in line, got in the car and took off with her student. The second examiner was an older man with a totally grouchy look on his face. He stood outside in the heat and just looked mean. After a while, he took the next car in line and spent a super long time going over the car and checking it out. I thought that he was going to fail the person before even getting on the road. He never cracked a smile. I was really getting nervous now. I did not want him to administer my test. In the meantime, another examiner, a sort of heavy guy with a happy smile, returned from the course with a young girl. The girl was doing a little victory dance in the parking lot and her mom (I think it was her mom) ran across the parking lot and hugged her and the examiner and they all were so happy. Anyone nearby could tell that she had passed and was very very happy. The mom and examiner were all happy too. Well, I was sad. The woman examiner had not come back and I guessed that the happy guy examiner would take a break and I would get whoever came out next (or the grouchy guy would come back). Well, the happy guy went inside and we just sat there. It was probably only five minutes, but felt like an hour. Then the happy examiner guy came out and walked up to my car. He was very pleasant, checked that my dad was a licensed driver and then took the seat next to me to begin the test. He was friendly and nice and immediately put me at ease. He performed a quick check of the car and then we were heading down the course to the parellel parking. As soon as we took off, I noticed a bug out of my left eye. It seemed really big and it was moving along my left side window and IT WAS INSIDE THE CAR! I glanced over and realized that it was moving really close to me. I didn't want to interrupt the test, we had already started down the course, but I was afraid that I would crash if the bug jumped on me. So, I causually asked the examiner if I could stop. He looked concerned. I quickly rambled on about the bug and that it was crawling towards me. He said - "yes, that is a stink bug, get that thing out of the car, but don't crush it"! I quickly stopped the car and opened the door and shooed the bug out the window. After all that commotion, I was a bit nervous starting up again, but quickly calmed down and continued on to the parallel parking! Anyway, that is my funny stink bug story.

CONSULTATION WITH RADIATION ONCOLOGIST

Yes, another week full of appointments. Monday was the "big" consultation with the Radiation Oncologist. Many of you have asked about the consultation and I don't think that I have been able to give a good answer regarding the consultation. Mostly because it is all rather complicated. In short, this is the situation: The treatment protocol for my type of cancer (CNS Lymphoma) is chemotherapy (high dose methotrexate) and whole brain radiation ("WBR"). In my case, I started with surgery to remove the tumor, but that is not the "normal" for lymphoma. Apparently, the surgery was more to save my eyesight and stop the tumor growth and not to rid my body of the cancer. I am not certain that I ever totally realized that. So much happened so fast last October (yes, almost a full year ago). Those first few weeks after diagnosis are still a bit of a blurr! So, after the surgery, I started the chemotherapy treatments - initially 8, every other week (with the break in-between for the bacterial infection, pneumonia, coma, etc. (a/k/a Major Health Setback). After living through the 8 chemotherapy treatments and the Major Health Setback, I started the "maintenance" chemotherapy which consisted of 6 monthly chemotherapy treatments. All 14 of the chemotherapy treatments are now over (woo hoo!). So, as treatment protocol's go - it is now time for radiation and in this case, WBR. The problem with WBR is that it is controversial and could cause some rather serious side effects. On the good side, it could also give me a much greater chance of remission and survival. The Radiation Oncologist was great - really explained the different studies and reasons to have the radiation vs. the reasons not to have the radiation. The decision is now up to me and it is a tough one. As I promised my oncologist, I will make an informed decision. There are lots of reasons for and lots of reasons against the WBR - all too technical and way too deep to outline here. The bottom line is that each is risky and I have to decide which risk I am more willing to take. (A real conundrum for me - my friends would tell you that I am not a "risk taker" and these days, I have a hard enough time deciding where to eat lunch :). Although I am mostly against WBR, I want to consult with my oncologist and then I will make my decision. On the positive side, at this point, my body does not seem to have any cancer - so for now, we beat it! Update to follow. Keep sending me your positive thoughts and prayers - please know that they are appreciated and are working!

GOOD RESULTS - Recent Brain MRI & PET Scan

Well, good news. The Brain MRI and PET Scan that I had on September 9th and 10th, all came out with good results. Yeah! I have always like good test scores! Yet another good step towards recovery! So many appointments, so much going on, so much more to do, but things are moving forward and that is a very good thing!

CANCER SURVIVORS DAY AT FRANKLIN SQUARE HOSP

I had not intended to go to the Cancer Survivors Day event at Franklin Square Hospital Center ("FSHC"), but I wound up there anyway. It is a long and interesting story, but the short version is that I was out with friends for a special event and sort of wound up at the Cancer Survivors event by accident. My friends and I were out with Rev. Cheri Smith. She has been a good friend to me while in treatment and is also the Director of the Pastoral Care Department at FSHC. She had to be at FSHC at 2:30 pm and we were all in the same car. Suddenly we were running late and rushing to get Rev. Cheri to FSHC and I finally asked her what she was going to. When she said that she was giving the Benediction at the Cancer Survivors Day event at FSHC, I was surprised - not that she would be giving the benediction, but because I had actually known about it, but had forgotten all about it! Well, we drove fast and got Rev. Cheri there in the nick of time and then we stayed for the event. It was odd, when we entered, I was asked if I was a "cancer survivor" and I hesitated before answering. It was strange - I am not sure why I hesitated. At this point in my life, I am a cancer survivor twice over. I had the gift of ten years after the first diagnosis and although I have been in treatment since this second diagnosis, I have survived (so far!) these last 11 months. Wow - yes, I am a cancer survivor - twice over! The guest speaker at the event was a young man named Owen Applequist. Not only was Adam a cancer survivor - twice, but he was an organ transplant survivor as well. And he is only 30! He has quite an inspirational story and is a mountain climber - climbing Mt. Kilimanjaro 95 days after finishing his last treatment for non-hodgkins lymphoma (the cancer that I had the first time). The other interesting thing about Owen is that his climbs are fundraisers for different cancer related agencies - one that helps recent cancer survivors to mountain climb, kayak and do other "adventure" sports. [Note: Don't worry - he did not inspire me to climb a mountain - way too cold and strenuous for my liking]. As I told one of the Nurse Managers there, "I have no intention of climbing a mountain, but I think that making an origami dragon is in my future". I am very happy that I attended the event. Rev. Cheri's benediction was very inspirational as well. Sometimes the best days happen "by accident".