Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
My story actually began 13 years ago this month, when I created my first caringbridge site under the "classic" sites www.caringbridge.org/mn/joellesyverson (
http://www.caringbridge.org/mn/joellesyverson). Thankfully I've been a survivor for many years and often get asked "can you send me your caringbridge site again or how come I don't get an email update when you post?" So based on that, I figured it was time to make the switch to the new version.
This journey has been filled with ups and downs as any journey is. As most of you know I began chemo again 6 months ago in October 2013 at so I'll begin my post with that entry....
Wednesday, October 9, 2013 7:11 PM CDT
Dear friends and family,
Leif and I were down in Rochester today for my 6 month check. Before heading to the Clinic we stopped in to see my parents. My mom recently underwent lung surgery on 9/25 for mesothelioma lung cancer. Thank you to all of you who have been faithfully praying for her and checking in on her status. She came through the surgery with flying colors and I'm very grateful they feel they caught her cancer early. She is doing very well considering the major surgery she just had. She still has quite a bit of pain, but in her true Scandinavian fashion is relying only on Tylenol for pain relief. She fatigues easily and still has quite a bit of healing to do. She will meet with her oncologist on 11/4 to review how things are looking in her lung and will continue close monitoring for the next 4 years. Thank you SO much for all of your prayers, God is good!
As for my "well-behaving" tumor, it's been a little naughty and needs a time-out. As we've known, my tumor has been growing ever so slowly for the past couple years and behaving quite nicely. Because I have felt great and have been asymptomatic we've just been watching and waiting. In the world of brain tumors "watching and waiting" is not all bad...it's actually a good thing other than you know the day is coming when it's time to treat and unfortunately today is the day.
Leif told me he was praying this morning for clarity as was I and our prayers were answered. Both my doctors were in complete agreement that it's time to take action and treat. So, with that said we were presented with 3 options.
Option #1 - surgery with a 30% chance of losing the mobility in my left arm. Since surgery would not cure me of my tumor and there's a chance of losing left arm mobility, my doctor said she would not recommend option #1 if I were her sister of family member. She didn't even need to say that before I had decided in my mind, no thanks! I'm fond of using my left arm and would like to keep it that way :) How would I give hugs???
Option #2 - chemotherapy using either Temodar or Avastin. Temodar is an oral chemo that I was on in 2009, completing 12 cycles. Back in 2009 and again today, my tumor is showing areas of enhancement, meaning the tumor is picking up the contrast dye they inject during the MRI scan. When the tumor shows enhancement, it means that some cells are changing and morphing into something more aggressive. Thankfully in 2009 the Temodar was effective in making the enhanced areas go away (aka killing them off). The Temodar, however, never shrunk my tumor, but it did keep it stable. So YEA, I got to live treatment free for 4 years...God is good!! The chemo regime is 5 days on 23 off with side effects of mainly fatigue with some nausea, but thank goodness for anti-nausea drugs. I love them, but they constipate the heck out of you (sorry for anyone that didn't want to know that). Bloated belly here I come!
Avastin is an infusion chemotherapy that is done every two weeks with not as much research/data for my type of tumor, so at this point we'll keep this drug for a later date.
Option #3 - radiation which is highly effective, BUT in reality the brain can only be radiated once. Radiation is an option we've been keeping in our back pocket since day 1. Our goal has always been to hold off radiation as long as possible and the fact that I've lived 12 years with out it, is amazing...God is good!! Mayo is builing a proton beam radiation center in Rochester and my hope is to hold off radiation until that is completed!
I had a blood test done right before we left today to check my counts. If everything checks out okay, I will start the oral chemo next Sunday the 13th. Leif and I are traveling to Haiti next month and we are working on scheduling my chemo around the trip. Leif serves on the Board of Feed My Starving Children (FMSC) and Haiti is one of the largest recipients of FMSC packed food.
I've mentioned in my entry a few times that God is good and I couldn't be more sincere in saying that! I feel incredibly blessed to have the health I have living with a disease that I've seen kill too many amazing people at such a young age. One of those amazing people is my friend, Kyhaunn Woods, who died one year ago today at the age of 39 leaving behind his beautiful wife and 3 darling little kids!
God is good all the time regardless of our circumstances!! He never changes, but remains faithful all the time and I am so thankful to be His child. He is the One who has allowed me to live all these years "freakishly fine" and has given me a peace that passes all understanding. He has allowed me the privilege of founding Humor to Fight the Tumor and through that has brought more meaning to my life than I could ever imagine. He has given me a completely different perspective on life, a perspective with eternity in mind, realizing that our life on earth is only a blip on the radar screen and there is nothing better than the opportunity to live with Him forever...can you tell I CAN'T WAIT!!?? If I could take my whole family with me, we'd be gone in a blink of an eye!
As always, Leif and I can't thank you enough for all of your love, support and prayers along this journey. We are blessed beyond measure by all of you and greatly humbled by how much you care...God is good!!! Can I get an Amen :)
With a grateful heart!
Love and blessings,
Joelle
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