Cancer Sucks and this world is crazy

      I would love to share that Mike’s recent CT scan was perfect but, let’s be honest cancer sucks and doesn’t care what you want! It has been 4 months since Mike’s last scan and 3 months since going off Blu-667 due to mounting side effects. After a month of detox symptoms including high heart rate, swollen ankles/feet, candida rashes, headaches, poor sleep and extreme fatigue he has been feeling great. We were so hopeful that the scans would show stability but God has other plans. Not only did the tumors in Mike’s right lung get more solid again but they also grew slightly. Not only that but there is now something going on in his left lung which has been clear since his thoracotomy and removal of a lobe in 2006! We have had all the emotions but to be honest right now I am mad! Mike’s lung tumors have been growing super slowly for the last 19 years but, they seem to have grown faster in the last three months since going off a clinical trial!?! Is it a coincidence or is there a correlation!?! We made the decision for Mike to go on the clinical trial drug because we only had a short time to sign up before the trial filled up with people, and they kept telling us that he would definitely have to do something someday. There are no crystal balls in life and we can’t go back and change anything but right now I’d like to. I hate cancer so much and wouldn’t wish it on anyone! A friend of ours told Mike that this is “a call to action” and he is right in more ways than one! Mayo’s plan is to do another CT scan in January and then make a treatment plan. Our plan is to continue to read, research, and pray! There are many other alternative things we can add to what we already do, we just need to research what is best. We do ask you to join us in prayer, specifically that the tumors stop growing in both lungs, and that this crazy world we live in gets back to normal… Normal, not “a new normal”!!!

     I know a lot of people are scared of this virus that has shut our country down, and we were at first as well. We wore masks and disposable gloves and wiped all groceries and deliveries down before bringing them in to the house. We didn’t hug our kids and grandkids, didn’t see our 10th grandchild for several weeks, we did our part to “slow the curve” but, the curve is basically flat now and there is no end in sight! When will lockdowns and mask mandates stop? When the chance of dying is zero?!? That’s not realistic and it is sad that anyone has to die! I’m not denying that the virus exists, it does and it seems to be easily transmissible, but it’s not nearly as deadly as the static’s showed at the beginning! Maybe our government, the doctors and “scientists” should have told people to build their immune systems, to lose weight if they are obese, to exercise, to get fresh air and sunshine, and get good quality sleep instead of locking the country and our economy  down and causing more alcohol and drug addictions, more suicides, more divorce, more child abuse, etc...etc... We can’t do anything about our age (One of the co-morbidities) but we can build a healthy immune system. I’m sure there are a lot of people that disagree with me and that’s ok. If you live with cancer specifically stage 4 NSCLC, your chances of living more than 5 years is about 6%!!! Your chances of living through CoVid is about 99% so I encourage you to LIVE like you mean it! LIVE in Faith not in fear! 

     I will leave you with a quote that we love from Nikki Banas titled: DECIDE

     You are the only one in charge of your destiny. Unfair things may happen to you, unfortunate times may come to you, but you always get to choose how you respond. You can live in frustration and bitterness, or you can be the bigger person and just play the hell out of the cards that you are dealt! The truth is that not a single person can choose the cards they receive, but everyone chooses how they play their cards.

     Be Blessed,

     Paula

     

     

Bye Bye Blu

     Yesterday was Mike’s monthly Mayo visit with bloodwork, short exam and a talk with Dr. Molina. After discussing all of his side effects (more than I’ve mentioned) and ALL the excess radiation from CT scans every other month we decided together with our oncologist that Mike will stop the Blu Clinical Trial. The other RET, Tyrosine kinase inhibitor drug that is exactly like Blu got approved so if the tumors start to grow Mike could start on that drug but wouldn’t have to have CT scans every other month. Please do not make more out of this than what I am telling you. Mike feels great except for the side effects and he has NOT had progression, we are not giving up in any way! Mike is tough and could deal with these side effects BUT... nobody knows the true long term risks from a drug that is in a trial. It could actually be causing skin cancer or some other cancer and 1 CT scan is like 600 X-rays and for the trial they also scan his whole upper body causing even more iodizing radiation and possibly other cancers. Mike’s oncologist even said he has had way too many CT scans for someone his age (well above 40-50)! We feel good about our decision to give his body a break and pray the tumors “behave” and don’t grow! Faith over fear!

     I have read and listened to (🧡 Audible) so many books in the last few months and some of my favorites include: Fortitude by Dan Crenshaw; The Coffee Bean and the Change Agent by Damon West; It Takes What It Takes by Trevor Moawad, Plague of Corruption by Judy Mikovits , and Radical Hope by Kelly Ann Turner (her first book Radical Remission was also great) and American Values by Robert F. Kennedy Jr. all are great and only one is about cancer but I have learned a lot from all of them. In Radical Remission and Radical Hope the author says that after interviewing thousands of “terminal” cancer survivors She discovered that EVERY ONE of them did the following 10 things:
1) Exercise-it doesn’t matter what, just move your body
2)Found a spiritual connection
3)Empowered themselves
4)Increased positive emotions
5)Followed their intuition
6) Released suppressed emotions
7)Changed their diet-some ate Vegan, some Paleo, some Keto, just not the typical SAD (standard American diet) not every diet works for every person or every cancer
8) Take herbs and supplements
9)Have/Define a really strong desire to live
10) increased their social support

     We have worked on most of these things for at least the last 9 years since Mikes last  thorocotomy. We aren’t perfect but we will continue to work on these things and trust God to guide us through this scary/crazy world we live in. Dan Crenshaw writes in his book Fortitude that we should all try hard not to offend and try even harder not to be offended... not always easy but something to strive after!

     Isaiah 40:29-31 He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. 🧡

     Don’t give up, Don’t ever give up... has been one of our life motto’s since Jimmy V. said it in his ESPN speech years ago, and we will continue to live by it!

     Be blessed,

     Paula

National Cancer Survivors Day

      It is National Cancer Survivors Day so figured it would be a good day to update the blog and honor Mike as a survivor/thriver for almost 19 years (July). He has gone through so much and continues to do all he can to live with and not die from cancer! We went to Mayo almost a month ago for scans, bloodwork and to meet with oncology. With COVID still going on we had to drive up to Rochester for him to be tested several days before his appointment. His nasal swab was negative so we were cleared for his appointments. The day at Mayo was VERY weird with EVERYONE wearing masks. We even saw people walking around outside and driving their cars with masks on...

     Mike’s bloodwork was about the same and they included a COVID antibody test which was also negative. Dr. Molina went over the CT scans and said all the nodules look about the same. The radiologist report that came to his Mayo portal said one of the nodules measured slightly bigger... not what we wanted to hear. Dr.Molina says not to worry and that he thinks it is inflammation. We go to Mayo again this Friday for bloodwork and to discuss things. I would love to have a positive spin on things but sometimes it’s hard. The side effects of Blu are real and wear on a person and the fact is that this is a trial so nobody knows the long term side effects!

       The world seems like it is burning from the inside out and everyone is so divided and there doesn’t seem to be an end in sight! Seems like every day we wake up with a positive outlook only to be met with ongoing bad/sad news.  We really like Tony Dungy and he has a great daily devotional book called Uncommon Life Daily Challenge and his June 3rd bible verse and words seem so appropriate that I wanted to share. Exodus 14:13-15 Moses told the people “ Don’t be afraid. Just stand still and watch the Lord rescue you today. The Egyptian’s you see today will never be seen again. The Lord himself will fight for you. Just stay calm.” Then the Lord said to Moses, “ why are you crying out to me? Tell the people to get moving!” Tony says that God doesn’t want Christians to be soft, weak, or passive. Be good at what you are called to do. Don’t let your stress level grow. You can’t control everything. He says you can only prepare up to a point and then you have to step back like Moses did and say “I’ve done enough. The Lord Himself will fight for me.” It’s hard at times to just be calm and trust that He is always with  us, walking beside us and fighting for us, but...that is what we will do! We will continue to have Faith over Fear!

     Just Breathe,

     Paula

Trials: Clinical and Life

     I have tried to write a new blog post so many times but just can’t seem to put my words together but after several calls from out of town/state friends I decided I better get busy. Mike’s Clinical Trial drug Blu 667 now has a name (Praletanib) so that must mean it is closer to being approved. Mike’s CT scan 3 months ago showed either stability or slight shrinkage in all 7 nodules in his right lung so that was great news! Like all drugs however, Blu has a long list of side effects and Mike has several. He continues to have neuropathy in his hands and feet but it has not gotten any worse. It has also caused crazy hair growth...he has even had to have his eyelashes trimmed several times so he can see. The medication also causes dryness (skin, eyes, throat) and he was having trouble with his vision due to such dry eyes but after several trips to our eye doctor and new moisture drops and gel, he is seeing well again, if he keeps up with them. Blu also causes sensitivity to the sun which caused pretty bad blistering on his ears and hands which don’t really want to heal up. There are other side effects, but what matters most is that it is working on the tumors so we are focusing on that.

     We took our whole family to Arizona for spring break after Jack’s college basketball season ended. We had a great time until the world went crazy due to the C- virus. We had planned on staying an extra week in AZ after the kids all flew home and were going to fly into MN for Mikes bi-monthly CT scan at Mayo, but due to the “pandemic” Mike’s oncologists highly recommended we stay in AZ. They scheduled the CT scan and bloodwork at the Scottsdale Mayo campus. The day before the appointment however, Dr. Molina called again and did a phone consultation and they canceled the CT scan and blood work because they didn’t want to risk him going to the hospital. We love Arizona and normally would be happy for extra time there, but with a crazy world it just seemed weird, so we eventually made it home and have  been staying safe here in Iowa. We were supposed to go to Mayo last week for blood work but they called and switched it to Charles City and we did a phone consult again with the Doctor. Mike’s lab’s were actually better than they have been and his liver enzymes have come down some, so that’s great news!

     This pandemic/lockdown is hard on everyone, even introverts like me, and especially extroverts like Mike. It’s hard for business owners, employees, teachers, students, (especially seniors).  Right now the future is uncertain for everyone. As a cancer survivor/thriver and caregiver we live with unknowns every single day! Every ache, pain, cough, makes you pause…and question the future, and I think C-19 is causing this in the general population! I was hopeful that this “pandemic” would bring people together, but it doesn’t seem to be, it actually seems to be dividing people and that is sad to me! Living with and not dying from cancer is our motto! None of us knows what the future holds so we need to live! Don’t WATCH the news, just check it, get enough information so you know what’s going on but if you’re WATCHING the news, no matter what source it is, it is having a negative impact on you and your health! We can either choose to sit around and complain or we can choose to live each day to the fullest! Get things done while you have this time to do them. Call or text Friends, clean and organize your house, listen to motivational and uplifting Podcasts] or Books, read books, heck start writing a book, start a garden, walk, run, get out of the house and get some sunshine because vitamin D is super important for your immunity. Do things that bring you joy.

     A couple months ago I somehow (God-thing) started following @Kimcankickit (she played soccer at the university of Iowa) and her husband @heyurkim’shusband on Instagram and I binged on Kim’s post because even though she had metastatic cancer she was trying so hard to truly live!  Sadly the day after I started following her, she passed away leaving behind her husband and little girl, which was super sad! Her life was way too short, but she showed up for her family and herself everyday. Also, if you haven’t heard of Jay and Katherine Wolf you should check them out on Instagram @hopeheals and their books Hope Heals and Suffer Strong are excellent! Katherine suffered a massive brainstem stroke at the age of 26, when their first baby was only six months old! They could have been bitter  and turned away from God but instead they turned their struggles into helping others through Hope Heals. They are so inspirational!

     None of us knows what tomorrow will look like, but God does! I am not saying any of this is easy and we certainly have our days when we get negative and down, but we  do know that our Lord does know what’s best and we will persevere. We believe in his word and trust that he will get us through this trial of COVID-19 just like he has gotten us through the cancer trial and every other trial in our lives.  Don’t give up… Don’t ever give up!

     James 1:2-4 and 12...2)Count it all joy my brothers, when you meet trials of various kinds, 3)for you know that the testing of your faith produces steadfastness. 4)And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. 12)Blessed is the man who remain steadfast under trial, for when he has stood the test he will receive the crown of life which God has promised to those who love him.

    Be blessed,

    Paula