Good Evening, Today is Sunday – August 5th….
We are going to start out this post a bit heavy, I feel the need for providing some history and to be a bit transparent. I promise if you stick with me, we will end this post on a bright / positive note (including pictures). Being the detailed type of person that I am, I am going to have a lot of these times over the next year because I know exact dates of every Radiation Treatment, every Chemo Treatment, every MRI, every Positive & Negative result we experienced. This is Healing for me (kind of like the Tattoo…thanks for the feedback, it was all positive).
As the title suggests, guess what? One Year Ago This Week, more specifically...One-Year-Ago- (O-Y-A-) …..
O-Y-A-Last Monday (July 30th) – Britt and Kenneth got Married..:-)
O-Y-A-Last Wednesday (Aug 1st) – I took Janelle to the Doctor; We (the entire family) were certainly concerned, as at the wedding it was very apparent that something was not quite right. I just wanted to find out what was wrong so I could fix it. That’s what I do really well in every situation. We were directed to the local hospital emergency room, so we could have a CT Scan. One hour later the ER Doctor came in, matter of fact said…. “I am sorry. You have a Brain Tumor; we are going to transport you downtown to the main hospital for further diagnosis and consultation”. He left, we both kind of looked at each other, I grabbed Janelle’s hands and said… “WE WILL BE OK”. We then Prayed.
O-Y-A-Last Thursday-Friday (8/2 – 8/3) – Kind of a blur of activities. We were in the hospital, all kinds of Doctors and Nurses coming in; working toward having a Brain Biopsy to pin point what we were dealing with. There were XRays, MRIs and a dreadful dosage of very potent steroids to reduce the swelling in Janelle’s brain. The Biopsy was scheduled and delayed twice, both times because of people who had traumatic brain injuries and were in jeopardy of dying if not handled immediately. That was OK, obviously a bit frustrating and kept our stress level rather high, but very necessary if a life could be saved. During these days, we were also given explanation of why our brain tumor was inoperable. Too deep were the words used. What that really meant was that getting to this little monster would cause much more damage than good. It was also the first time I ever heard of something called Glioblastoma Multiforme (GBM). I probably would not have posted this picture, however I found it on the Blog from last August so if Janelle was willing to post it, I can certainly repost. Lots of uncertainty in our life but the smile was always there....
O-Y-A-Yesterday (Aug 4th) – Brain Biopsy performed. Doctor confirmed that it was indeed a GBM. I remember asking him if it was malignant. He kind of looked at me for a second before answering YES. These guys are very good at what they do, they deal with this stuff all of the time which is a bit scary to think about. They also really don’t have much personality. Upon further reflection in the weeks ahead about my question to him, I think he was basically looking at me and thinking…of course it is malignant you dummy, THEY ALWAYS ARE!
O-Y-A-Tomorrow (Aug 6th) – We came home! The house was filled with flowers & food & LOVE. Have I ever told you that we have a great support system? It is still in place today. On the left, waiting for the nurse to discharge us. On the right our initial Welcome Home.
So also on this day, I decided it was time to do a Google search on this thing called Glioblastoma Multiforme. It only took one click to find this:
Glioblastoma Multiforme (GBM) is the most common and most aggressive of the primary brain tumors. The current World Health Organization (WHO) classification of primary brain tumors lists GBM as a grade IV Astrocytoma. Astrocytoma is one of 3 distinct types of Gliomas in the brain, although mixed cell types occur as well. GBMs are highly malignant, infiltrate the brain extensively, and at times may become enormous before turning symptomatic.
Prognosis for those suffering with GBM is poor. Without treatment, patients have a life expectancy of three months. With optimal treatment, the mean survival rate is 12 months. Fewer than 25 percent of patients live past two years and fewer than 10 percent survive past five years.
Treatment for GBM is palliative, meaning treatment is not meant to cure the cancer but intended to improve the patient's quality of life and perhaps prolong it. Treatments include surgery, chemotherapy and radiation therapy. Drug therapy is not usually advised because many drugs can't pass the blood brain barrier to reach the tumor. Surgery is usually the first step in treatment. In general, the greater the amount of the tumor that can be removed, the longer the patient will live. Depending on what the doctor finds during surgery, some or even none of the tumor may be removable. Radiation therapy and then chemotherapy to further reduce tumor size, even though the reduction is usually only temporary, is standard after surgery treatment.
ALMOST DONE!
So, my world was spinning out of control (and I am a control freak; easier to fix things that way). My wife and best friend of almost 31 years was going to die and there was nothing I could do to fix it. Advice was coming in much faster than I could process it. Decisions had to be made. What kind of treatment? Where would we choose to have the treatment done? By the way, once you make these decisions it still can take weeks before treatment starts and all of that time this “THING” is growing inside you. On the advice…certainly some of it was good however most of it was not wanted, not asked for and was not helpful to the situation. I could write a book on the subject of what people should / should not do for others during times of extreme crisis. The key points from my Google search above were: #1) GBMs are highly malignant, #2) With optimal treatment, the mean survival rate is 12 months and #3) Treatment is not meant to cure the cancer but intended to improve the patient's quality of life.
I am also a Bottom Line / Net-Net type of guy. Understanding that the survival rate statistics include everybody (ie: people who have an option for surgery and removal of at least some of the tumor), my wife was going to die and chances were it would be before August of 2012.
STAYING POSITIVE - 100% critical that Janelle and anybody around her stay in that mind set. Janelle did that very well, pretty much all the way to May 10, 2012. We certainly had some pretty deep conversations about the future. Once in a while she focused it on my future and what her desires were for me; I kept it focused on our future. Were there a lot of tears in our private time…most definitely, but again, I focused on what fun things we should plan on doing once the chemo treatment was behind us, places we have always wanted to go but never made it to. Me? I certainly was living with a split personality. ALWAYS positive and upbeat when I was with Janelle or anybody else. We were going to beat this thing! When I was alone...... devastated, slipping back into my Net-Net mode. Grieving? Janelle has been gone now 12 weeks, my grieving just past the 52 week point. So, that is the Ken's version of the events from One-Year-Ago.....This Week.
2012 - 24 Hours of Booty - Charlotte, NC
As I mentioned on last week's post, a week back last Friday, I participated (actually all I did was show up and take a few pictures) in this event which raises money for various Cancer research. In the case of Marguerite, here is the statement she used on her fundraising page this year…..
My ride this year is personal for me as I dedicate it to the Hayes Family of Charlotte, NC. Janelle Hayes, 53, was the director of Sharon Baptist Weekday School for 13 years. Their brave battle against Glioblastoma Multiforme (GBM is the most common and most aggressive of the primary brain tumors) has been inspirational and challenging just like the ride.
Local recipients included the Blumenthal Cancer Center at Carolinas Medical Center and The Brain Tumor Fund for the Carolinas. She of course started this process while My Janelle was with us and we enjoyed readying the updates together. As you will see in the picture below, Marguerite rode with a picture of Janelle on her back with her “So - What Are You Doing” quote from September 24, 2011.
Great Event, Marguerite had a personal goal to raise $2,700; she raised $4,051.08! Thank you to all who supported her (& My Janelle indirectly). Here are a few pictures of the event. Starting in the upper left and going clockwise…. #1) The Fourqurean Family & Me (family includes husband David, Big & Little Sisters Sophie Ann & Gracie); #2) Marguerite with her biking machine; #3) The back of Marguerite’s Uniform; and #4) Marguerite finishing her first lap through the streets of Charlotte.
The Lake (aka Lake Norman)
I had also mentioned last week that I would update you on my time at the lake last Sunday. I really don't have a lot of details to share because frankly I just did a lot of hanging out & talking. Looking out on the lake and watching the various summer time activities / scenery that take place on a large lake every weekend is VERY RELAXING! The highlight as I did discuss was that I got to explain my Tattoo to a couple of 12 year olds and they LOVED the ink and explanation very much. I had so much fun at the lake that I was out there again this weekend and I hope to be out there a few more times before the summer and hot weather ends.
My Janelle Pictures
A week back on Saturday night, I was hanging out at close friend’s Andy & Margie Nance’s house along with Margie’s sister Susie, neighbor Rob and my decorator friend Caroline. At some point in our discussions we (me & Andy & Margie) starting telling stories from the early 90’s. We all moved into the neighborhood in the late 80’s, our families have always been close so we have lots of stories. We got talking about a Disney Cruise that Margie had orchestrated for our families as well for another family that has moved away (The Durocher’s). I told Margie that I had found “The Picture”. She laughed, she of course knows what “The Picture” is and indicated that it really needed to make the blog. I listen well so it is the one on the left below. The humor that all of us (including Janelle) shared was that this was a perfect picture of the Hayes Family Attitudes/Dispositions. Very simply, Ian was not a happy camper and wanted no part of going to the Captain’s dinner. Britt was trying very hard to console her younger brother and tell him it would be ok. I of course was more thinking about giving him something to really cry about like a smack on the back end and My Janelle, well she wanted a picture taken and at least seems to be oblivious of what is taking place around her. On the right, I decided in honor of my daughter and her husband celebrating their first year of marriage earlier this week, to provide the wedding photo of our family. While the last year has been difficult for all of us, the wedding was just such a great time for our family and friends.
Thank you for letting me share my heart. It was very therapeutic for me and I hope bearable to you. I had not really thought through all of that until I started writing and it just kept coming to me so again thank you, sorry it was a bit long. I am tired. I was gone all last week on business, busy weekend, home a few days this upcoming week before heading to Oregon for 11 days. Then home for a few days and back to DC for another week. Then it is going to be Labor Day. Time is moving along pretty fast for me right now. My Healing / Grieving? Staying busy and with fun people is very good for me and frankly I am making significant progress from being Sad and Feeling Sorry For Myself to reflecting on How Blessed I Have Been to have had a 31+ year marriage to my best friend and that I have Two(2) Great Kids, One(1) Great Son-In-Law, One(1) Great 2nd Daughter, A Great Extended Family, Great Friends and even a Great Dog. Life could certainly be much worse.
And finally as always, THANK YOU for staying with me and sending me comments on the blog as well as emails and cards via the mail. Last week, 1,123 different email addresses hit the blog between Sunday night and Tuesday morning. It is really unbelievable to me. I will plan to talk to you next Sunday night from Albany, Oregon.
Ken
Khayes1032@aol.com (Email)
khayes@carolina.rr.com (Facebook)
Strength and Peace to You ….. Psalms 29:11
