Mayo, tattoo’s, and slowing down

    Today is day 10 of Blu-667, and Mike is doing well, besides tingling in his finger tips, and being somewhat dizzy, and fatigued, and only weighing 149 pounds!😬 Yesterday at Mayo was just blood work and a meeting with the oncologist. A few things like neutrophils, and lymphocytes were low but they said that was expected and not to worry. Next weeks appointments will include 2 or3 more ECG’s, double the blood draws and more visits with doctors.

    Julia and her kids are staying with us for the week, so they came to Rochester along with Jackson. Mike and Jackson then drove to Minneapolis, and Jack got an awesome tattoo that he has wanted for quite awhile to honor his dad and best friend🥰😭. It is a Stuart Scott quote about cancer, and although Stuart died it is a great reminder of how to live.

    In my book: It’s not Supposed to be this Way, Lysa talks about slowing down... getting so quite that God’s voice is the loudest voice in your life. We can’t “quit life” when things get hard, but we can cut out things that aren’t as important. Mike has worked hard in the car business for close to 40 years, and is now blessed with great family and employees so he can slow down. I have always been one to like my alone/quite time but Mike is learning to enjoy it. He has been reading more, sitting a little more, walking more, mowing the lawn and doing yard work, and enjoying family, and it is great for his body, mind and soul. In her book Lysa says when you live slow for a season, the 🌞 and the Son have access to the parts of you that you normally cover up with not only clothes but everyday put-ons. It’s not always easy to be exposed, to be vulnerable, to let the world into our lives, but when we do we see that most people really do care and will pray and help if they can.

    James 1:2-4 Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

    Just Breathe,

    Paula

Clinical Trial...

    The books I usually read have to do with cancer prevention and healing, healthy living, and more cancer stuff but this week I started Lysa Terkeurst’s book “It’s Not Supposed To Be This Way”  and this paragraph in it is so appropriate right now: “When His timing seems questionable, His lack of intervention seems hurtful, and His promises seem doubtful, I get afraid. I get confused. And left alone with those feelings, I can’t help but feel disappointed that God isn’t doing what I assume a good God should do.”   We have had our ups and downs of trusting God in this season and often we feel  like He is not listening! I want to throw a tantrum and tell Him what to do and when to do it, but then I settle down and realize that God always knows what He is doing and why and with perfect timing. So with lots of prayer, research, talking with each other, family and our medical team we have decided to start the phase 1 clinical trial of Blu-667. This drug has only been in trial for about 18 months so doesn’t have any long term data. Mike will be a guinea pig, but the doctors have told us they are seeing very good results for RET mutation lung cancer.

       Stress is a bad thing and since the CT, PET and Brain MRI results a couple of weeks ago we have definitely been stressed. We have cried, had too many sleepless nights, I got a massive cold sore, and Mike had a 4+ hour migraine headache which he hasn’t had for over 10 years, and even though we knew that the tiny brain met couldn’t cause the migraine, thoughts go through your head creating more stress. Adding to the stress is that our “baby boy” moves out soon and heads to college, leaving us empty nesters after having kids in the house for the past 35 years.😫😢 It’s not always easy to release things, and trust in the Lord to handle things, but we are learning.

    We enjoyed a beautiful day at Rice Lake Golf Club with Jim, Nathan and Jordan Molstead today and then headed up to Rochester. Mike has bloodwork at 7:20 am then an EKG and after that a  consult with his oncologist before beginning the clinical trial. More appointments Tuesday before heading home. Prayers for healing and no side effects would be greatly appreciated!

    Be blessed,

    Paula

Results

    The good news is that Mikes bloodwork was perfect but the bad news is that 3 tumors in his right lung lit up on his PET scan showing that they are active and growing, and the brain MRI showed a TINY spot that is most likely a metastasis but is inconclusive. We were completely shocked because Mike feels great and doesn’t have any symptoms. Even though the results weren’t what we had prayed for, we are happy that the PET only lit up in the lung and nowhere else! There is a clinical trial called Blu-667 (it doesn’t have a proper name yet), that they want Mike to enroll in, that will require us to go to Mayo once a week for bloodwork, and other testing, so we are reading the thick binder about it and will decide very soon if that is the route we want to go.

    We so appreciate all the prayers and kind words on Facebook! Like I said I don’t share much but when you get so many responses and words of encouragement  you realize that people really do care and all the nice messages and extra prayers helped to lift us up. We don't understand why an athletic, life long non-smoker would get lung cancer before the age of 40, but we do know that God is in control and HE knows. We will continue to live life to the fullest and trust in Him!

    I will let you know what decide about Blu-667 after we read all the paperwork

    Be blessed,

    Paula

Reality

    Cancer has been our reality for the past 18 plus years. We go through times not thinking about it as much as others but it’s always in our thoughts, our payers, our conscious and sub-conscious. We just spent four great days in Chicago with Jackson and Lindsey visiting Jared and Kelly, and when you are busy you can kind of put the thoughts of cancer out of your mind temporarily but it’s never totally gone.

    Reality is kicking in full force because we are at Mayo today. You would think that coming here all these years would make it easier, but it doesn’t! We hate it... wheelchairs, bald heads, masks, and just very sick looking people everywhere you look...REALITY! Mike had bloodwork this morning and is now in getting a brain MRI, and later has a PET scan to rule out any metastasis. The lung cancer tumor board is recommending a clinical trial but he has to have all these tests before he can be a candidate. We absolutely hate the fact that he has had well over 30 CT scans which equals anywhere between 100-800 chest x-rays each time.  This will be his second PET which equals way more radiation than that. We are hoping to get out of here by 6pm to drive back home, sleep 🙏🏼, and drive back up to Rochester in the morning to meet with the radiation oncologist and the medical thoracic oncologist (separately) to discuss results and options..... REALITY!!!

    Prayers would be appreciated for clear brain MRI and that the PET doesn’t light up at all!!! We are not scared and have faith that God is working in a mighty way to heal Mike and that we are on the right path.

    I will post results tomorrow... in the meantime love on your family and enjoy life!

    Eat, pray, breathe,

    Paula