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
[email protected] (Email)
[email protected] (Facebook)
Strength and Peace to You ….. Psalms 29:11
Thank you for sharing and being so transparent. I've been thinking about/praying for you this last week as I knew it was the anniversary of diagnosis following the wedding last year. Keep pressing in and holding on!
Blessings,
Cindy K
Posted by: Cindy K | 08/05/2012 at 09:05 PM
Your strength and gentleness amaze me, and was such a blessing to Janelle...and "The Picture" is the greatest picture EVER! Thank you so much for sharing it with us! Love and blessings ;-)
Posted by: Holly | 08/05/2012 at 09:12 PM
I remember Janelle's posts a year ago and how I cried for her as I was reading. I never told her I had a close friend who also had a brain tumor - she died in 2006. I prayed that Janelle would beat this too. But, I am so very happy that I found Janelle's blog and became an "internet" friend. Your posts are so much like Janelle's (minus the cards) and I am happy you have chosen to continue her blog...I think you are helping a lot of her friends, as well as yourself, get through the grieving process. You and your family continue to be in my thoughts and prayers. Sending you (((BIG HUGS)))
Posted by: Connie F. | 08/05/2012 at 09:13 PM
that photo on the cruise is priceless and of course i love the wedding one.!!! hang in there and see ya soon!
Posted by: susie p | 08/05/2012 at 09:27 PM
Hey Ken- I have Janelle's picture and the 'so-what are you doing' on my refrigerator. It is changing my life. Would you have thought of yourself doing all the things you're doing and talking to all the people you are talking to? And to that I say: "Go Ken Go!" Janelle is cheering you on. Love the updates-keep 'em comin.'
Joan
Posted by: Joan | 08/05/2012 at 09:38 PM
Thanks for sharing Ken. Have a blessed week.
Posted by: Linda | 08/05/2012 at 09:56 PM
I love that you are keeping up with the blog! Really!! I look forward to your post every Sunday! It makes me feel like Janelle is still here! I love the picture where Janelle is oblivious... it made me laugh out loud! :) I love that you got a tattoo!! Very cool!! I am glad that you are doing well! I think Janelle would be so proud of how honest you are and she would feel so loved by reading your posts about her! I don't comment every time but you know I am reading and still loving you all!
Posted by: Kelley Eubanks | 08/05/2012 at 11:15 PM
Thanks for another great post, Ken. Loved
the cruise pic. I only knew Janelle through
her blog, but I would "recognize" that
personality anywhere. What a hoot! She was
oblivious, for sure. Have a safe trip to
Oregon. Looking forward to your next post.
Posted by: Sherry in MI | 08/06/2012 at 02:28 AM
i remember Janelle's posts one year ago too. I was on vacation and when i got back i immidiately open my pc to see pictures of the wedding but learned horrible news instead.Oh Ken, i m a control freak too, i can tell you it doesn t help me much in times like that.
It is so amazing you open your heart t us.It is an honor.
Have a safe trip
Posted by: eleftheria | 08/06/2012 at 02:33 AM
Like everyone else - I look forward to your posts every Sunday. I begin stalking Your Janelle's blog in the late afternoon, hoping the weekly post will be there. Thank you so much for being transparent, kind, thoughtful and willing to share with all of us that are on this journey with you. I hope you enjoy your time in Oregon. Sending hugs and love.
Posted by: SueB | 08/06/2012 at 06:59 AM
That "picture" is hilarious!! Just wanted to let you know that I still think of you often and pray that you feel God's comfort and healing. Thanks for keeping us updated!
Posted by: Melissa Ladd | 08/06/2012 at 08:24 AM
Ken, Please know that you are still in our prayers. I love the cruise picture. I laughed so hard over that one. I think we had some of the those moments in my family.
Posted by: Lisa Busenbark | 08/06/2012 at 09:00 AM
Thank you, Ken for being so transparent and real! I must say I laughed when I read about the tattoo but it is a beautiful/wonderful tribute to "Your Janelle". Always am thankful to you for your kindnesses to this widow-lady and remember you in my prayers.
Posted by: Maggi McCutchen | 08/06/2012 at 09:04 AM
Love you brother, thanks for sharing your heart. All this has made me more aware of how precious time is with my family and I have made changes to spend more time with them and to work on being a better husband (not take having such a wonderful, "low maintenance" wife who puts the needs of her family first for granted). Thanks for helping me be a better man through your life. Lifting you up, Park
Posted by: Park Gillespie | 08/06/2012 at 10:13 AM
Thanks for sharing Ken, I hope you are well!
Posted by: Kevin Lundell | 08/06/2012 at 11:35 AM
Dear Ken,
I'm glad that the blogging is therapeutic for you. I read every week, even if I don't comment every week. Thank you for sharing your heart with us. To "know" Janelle was to also feel as if we "knew" you, too and the same goes for caring about you and how you are. I think she'd be tickled pink (and maybe surprised?) at how you've embraced the blog and made it yours and hers.
Laura
Posted by: Laura | 08/06/2012 at 04:57 PM
That photo of the family is even funnier than I remember. Love you!
Posted by: Margie Nance | 08/06/2012 at 05:02 PM
As always must appreciated - your heart
Posted by: Jan | 08/06/2012 at 05:14 PM
"give him something to cry about"
channeling KMH I
:)
Posted by: Lynne Bolinger | 08/06/2012 at 07:18 PM
Janelle's beautiful smile in all the photos no matter what the situation. Thanks for sharing, Ken.
Hugs.
Posted by: June K. | 08/06/2012 at 08:58 PM
WOW, Ken, you are one amazing guy! Janelle would be so proud of you for sharing so much of yourself in her absence. Glad to know that all of this posting and the support structure you have are helping you get through these difficult days and weeks ahead. Hoping you can enjoy your Oregon visit and that the Pacific Northwest is good to you. Take care and look forward to your future blog posts!
Posted by: Kathy Mc | 08/07/2012 at 01:56 AM
I love reading your weekly posts!
God bless your heart.
Giovana S.
Posted by: Giovana | 08/07/2012 at 02:44 PM
Aloha, am a bit late getting to your post this week, took a "stacation." We are (I feel like we are anyway) all so blessed that you have chosen to continue with your Janelle's blog and keep us all up to date with your personal journey! I too came to "know" Janelle through the blog and loved her beautiful cards and her perseverance through all her trials. Her testimonials were always thoughtful and thought provoking, I do miss those.
"The picture" had me laughing out loud several times as I read your commentary and looked at the picture. . . what a hoot! That smile on your Janelle's face is priceless.
So good of you to honor your daughter and son-in-law as well. . . Janelle was one lucky woman.
Do take care and I look forward to hearing of your trip to the NW and your onward journey. You continue in my prayers and thoughts.
Posted by: Goodly Creations | 08/07/2012 at 10:46 PM
This is my first time visiting this blog in over a year. I am stunned. I started crafting cards a couple years ago and I would visit this blog for inspiration. I felt too like I got to know Janelle through this and I especially loved that she was a Christian. I am truly saddened to learn of this news and my condolences to the family. You are an awesome husband and God bless you for continuing this blog. I feel like I've lost a mentor. i love that she oozed of joy throughout her struggle and I am certain she is Home in Our Heavenly father's house, probably teaching them how to make something :)
Posted by: Rianna | 08/08/2012 at 11:01 AM
Hi Ken just a quick note to let you know I had a poster made of pictures from the 24hours of Booty to say and we went to the service on Sunday(the girls stayed with us and were very well behaved!) at Sharon Baptist to say "Thank You".
Have a good trip- Marguerite
Posted by: Marguerite Fourqurean | 08/10/2012 at 07:31 PM