Have I ever mentioned how much I hate cancer!?!?!

      We were at Mayo September 12th and 13th to see how Mike is doing on his 1/2 dose of Retevmo and everything started out great with perfect bloodwork but then things went downhill. Next up was his CT scan with IV contrast (to be able to see things better) and the results popped up in Mikes portal before his next appointment and they were NOT what we expected! Their impression stated that there are multiple irregular part solid nodules in the right lung which have not significantly changed but, there is a new solid 2mm solid nodule in the left lower lobe… what!?! Not what we expected. Next up was a brain MRI with IV contrast and we were hoping that the previous 3 metastases in Mikes brain continued to shrink. The results however, came through on his portal while we were driving home and once again they were not what we expected. One of the previous nodules was stable but the other two grew and one almost doubled in size to 8mm and… there is an additional small 2 mm nodule in the medial left parietal lobe. Their impression reads: “Findings concerning for mild progression of cerebral metastases.”  Have I ever mentioned how much I hate cancer!?!?! HATE is a strong word but it fits the situation!!! We had three of our grandkids overnight while their parents were at a Ford meeting so that was a nice distraction but, the next morning after getting them off to school we drove back up to Rochester to meet with Mikes Oncologist Dr. Molina. He was not overly concerned with the CT scan and said that the newly discovered nodule in the left lung could have always been there and the machine did a better job of detecting it. He was however, concerned about the new brain nodule and the growth of the others. We discussed options which included increasing the dosage of the Retevmo/selpercatanib to double what Mike is on now and doing blood work every two weeks to check liver enzymes, then a repeat brain MRI in 8 weeks to see if the increase dose crosses the blood brain barrier better and shrinks the nodules. The other option would be to do Cyber-knife radiation where they would fit him with a helmet that has tiny holes in it and it would be screwed on😳😩 and the nodules would be zapped/radiated. We chose to go with the increase dosage of his medication.

     I can’t say that we haven’t been on a rollercoaster ride of emotions because we definitely have but, like Mike said after reading his results “I could get mad but, what good would that do for anyone”. Don’t get me wrong there are times when we get mad or sad but we don’t stay there,  we have our moment and then we move on, we let go, we live! I’ve said it before and I will say it again, “ LIVE your life”! Don’t just go through the motions to get through the day but truly enjoy the big things and the little things too. Nobody knows how much time they have left or what the future holds, especially in this seemingly upside down world we live in, so go out and make the most of it! I am talking to myself here too because I get stuck down rabbit holes looking at crazy stuff that is going on in the world but then I remind myself that the God that created this place we call home has the answers, He knows best and me worrying about things that may or may not happen is a waste of precious time! 

     Thank you for taking the time to read this post and thank you for praying with us for health and healing. We are believing that this increase in dosage will not affect Mikes liver and that it crosses the blood brain barrier and shrinks the brain nodules as well as the lung ones, and we are believing that the increase dosage won’t cause any other side effects. 

     Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. ❤️🙏🏼🙌🏼

     #cancer #stage4lungcancer #cancersucks #ihatecancer #mikeymo #beblessed #targetedtreatment #retevmo #mayo #nsclc #cancersurvivor #cancerthriver #brainmets

     Be blessed,

     Paula

It’s been awhile…

      It’s been awhile… 9 months to be exact since I posted anything, but today is World Lung Cancer Day so I thought this would be a good day to update you all on Mikes health. He continues to take Retevmo/ Selpercatinib at half dose morning and night and this dose seems to be working. He was supposed to go back to Mayo in July but can’t get in until September. He is feeling good most days besides some side effects like dry eyes and skin, stomach issues, some neuropathy and getting tired easily but he handles it well without much complaining. We even finished 75Hard (you can look it up if you don’t know what that is) in July which was actually a great distraction and taught us discipline! 

     We both made it through C🤫🤒🤧D in December without the highly recommended/pushed 💉 and did great with the MuCullough Protocol. I had it again in June and probably would of just thought it was allergies except for my complete loss of taste for two days, but as far as we know Mike didn’t. 

       Some days are easy and we just live life “like normal people”,  other days are hard and we just put one foot in front of the other and get through the day, but some days are really hard and we just have to trust God and give Him all our worries, anxieties and pain. I’d be lying if I said this Cancer journey is easy but, I think it is teaching us things daily and helping us to grow in our walk with Him.

     We have been enjoying the summer, the sunshine and grandkids softball and baseball games along with swimming and lots of family pickle ball games. Mike has been golfing and even shot a 6 under 66 a couple days ago! We also have a raised garden which Mike made and I take care of as well as two mini goats and 12 laying chickens, 3 roosters and two baby chicks which we hatched in an incubator. We are loving all the fresh eggs and garden produce. 

     We would encourage everyone to enjoy life… stop watching the news… don’t be afraid to breathe the fresh air, get some sunshine, walk in the grass and LIVE!!!❤️🌞🫁

#worldlungcancerday #lungcancer #stage4lungcancer #nsclc #beblessed #75hard #lungcancerthriver #mikeymo

Finally some good news

      Mike had a brain MRI and CT scan yesterday on Sunday, which was a weird experience but it was nice and quiet so that was good. We made it to our hotel room just in time to watch the Greenbay Packers beat the Seattle Seahawks, so that was good too. Today Mike had bloodwork early and we met with his Oncologist Dr. Molina who gave us some more good news that all his blood work is pretty much in normal ranges, and the best news is that two of the METS on his brain are completely gone, one is much smaller and not as “dark”, and all the lung tumors have gotten smaller and less dense!!!🙌🏼🙏🏼🙌🏼 He was completely off Retevmo for two weeks and at half dose for the last two weeks due to super high liver enzymes so they are going to leave him at the smaller dosage for now since it seems to be doing the job. Driving home from Rochester with good news is not something we have gotten to enjoy much in  the last 5 years so we are enjoying it! 

     We have had so many highs and lows with this cancer journey the past 21 years and we try to always trust God, but it’s human nature to try and “take control” of situations in our lives, and we are no exception. We have our moments when we get mad or sad, but those moments thankfully don’t last long and we always come back to the realization that we are NOT in control and we just have to have faith that God loves us and He knows what we are going through, why we are going though it and how it is going to end. We continue to pray for long, blessed lives that impact many people. We should all be grateful for every day that we get to live in the USA where we are still mostly free. I am going to steal some wise words from Chad Wright, who is a former Navy Seal and an endurance athlete who has a great podcast called the three of seven podcast. His latest IG post is great and he is talking about what we have been going through the past almost 2 years and he says “your fear of death consumes the very life you should have lived. The fullness of life cannot be lived in the shadow of impending death. Fear and timidity will prolong your miserable existence. Your life stops at their beginning.........he asks how us Christians can bear witness to the promise of eternal life when we can’t believe beyond the context of our own self preservation...... I love this and think it is so fitting for all of us, we need to start really living, not just going through the motions. We want to be running until the sand runs out! 

     We had a surprise 60th Birthday Party for Mike with just our immediate family but it was awesome and he loved it. We gave him a book called Dear Mike with letters to Mike from family, employees and friends, and it has lots of pictures it turned out so cool, and he said it is the best gift he’s ever gotten. A big thank you to our daughter in law Kelly for putting it all together!❤️

     November is Lung Cancer Awareness month. I won’t bore you with all the grim statistics but just know that all you need to get lung cancer is lungs! Lung cancer is on the rise among non-smokers and especially in women so find out the early warning signs and see your doctor if you have any symptoms. 

     Lastly, thanks for all the well wishes, kind words and prayers. The prayers are working and we are forever grateful! 

     Be blessed,

     Paula

         

     

     

     

Happy 60th Birthday

      First I want to say Happy 60th Birthday to Mike today,  I am so blessed to do life with him and am praying for many more birthdays! We can’t believe we are getting this “old” but are looking at it a different way...” we GET to be this old!”  So much has happened in the last month so hopefully I don’t make this too long.  Mike had to go off Retevmo and all additional supplements due to very high liver enzymes and has had repeat blood work several times but they remained high. Finally on Wednesday we went to Mayo again for bloodwork and an ultrasound of all of Mike’s internal organs. Thankfully all his organs look great and his liver enzymes are down enough that he can start back on his medication at half dose. They will check his blood again in a week or two and see if he is tolerating it and hopefully bump it up to regular dose. 🙏🏼

     We went to our place in Arizona with our son Josh and his family and had a great week in the sun but after much thought and prayer we decided to sell our home, so we listed it with our friend and realtor Susan. We rented a U-haul and packed up all our things with Josh’s help and now we are praying for the perfect buyer to come along and love it as much as we did. We managed to keep doing 75Hard the whole week until the last day. It didn’t really feel like our “bitch voices” got the better of us, it just felt way to stressful to continue! We wear Oura rings to track sleep, activity, heart rate, etc... and they were “telling us” that we were not listening to our bodies. So after 34 days completed we decided to pause 75Hard, but we will start back up because we really like the discipline of it. We are not looking at either thing as a defeat but a chance at starting over. 

     We have had so many positive responses to the podcast we were on with Amy Ledin and are so glad that we stepped out on a limb and did it, if it helps even one person with cancer or any other issues they are struggling with! Mike is a natural and God really blessed him with an ability to communicate with people. Thanks to all who took the time to listen, and if you haven’t listened to the podcast and want to, it is called F*it with Amy Ledin and it’s episode #113. 

     We are thankful for another year and want to encourage everyone to look for the blessings in every day because they are there if we pay attention! Right now it’s so easy to see all the bad going on in the world, I know I can get sucked into that rabbit hole more than I want to admit, but I climb my way back out and realize that I need to keep my focus on what I want in life not what I don’t want. Now it’s time for Jack’s Warburg Basketball season to start and we are super excited for that.

     Matthew 24:10-13 And then many will fall away and betray one another and hate one another. And many false prophets will arise and lead many astray. And because lawlessness will be increased, the love of many will grow cold. But the one who endures to the end will be saved.

     Endure, and be blessed,

     Paula

     

     

     

     

     

 

Quick update

      I just want to write a quick update to let everyone know that Mike is doing well. He is continuing to feel really good most days and the only real concern is that his liver enzymes and his blood calcium levels all elevated and Mayo wasn’t expecting them to elevate so quickly. He will have them drawn again next week to see if they have gone down and if not figure out why they are up and what to do about it. Mike has been doing longer infared sauna sessions and drinking lots more water so we will see if that helps!?!

     We were honored to be on a podcast which came out today which you can find it on Apple Podcast, iTunes, podchaser, etc... it is called F*It with Amy Ledin. Meeting Amy was a total “God thing” because one day I was on IG and I saw somebody put several #’s behind a post (I know...I’m older so this was new to me🥴😂) so I put in #lungcancer and started following a couple people that had lung cancer, one of which was Amy, who has been battling stage 4 lung cancer for 8 years. I loved how open, honest, and inspirational she is and saw that she had a podcast about faith, family, forgiveness, fitness and formula so started listening and enjoyed that so much that I decided to message her. I told Amy about Mike and how he has been battling/thriving thru lung cancer for over 20 years so we messaged back and forth and she read our blog and asked if we would like to be on her podcast.... She made it easy and I think it turned out very well, so give it a listen and share with someone who needs encouragement if you feel inclined. We also had never heard of 75 Hard but saw that Amy and her husband Erik were doing it for the second time so we researched it and read Andy Friscella’s book about it and decided to try it and... we are now on day 20! We both highly recommend the book even if you don’t want to do the program. 

    I just finished the book Win Your War... by Mark and Grace Driscoll and I really learned a lot. I am half way through Chasing Daylight... by Erwin McManus (he also wrote The Last Arrow which is one of our all time favorite books) and I am really enjoying it as well. A line I read today really stuck with me and it is this: Is your goal how long you live or that you live? If you seek Me, you will live, and death will not change that. After all, when we are in Christ, we have already died in Him, and He has already raised us to a new life.🙏🏼❤️🙌🏼 Don’t misunderstand, I want Mike, Amy, anyone dealing with a serious disease to live a LONG life and to ENJOY life, but if we are believers we know that we have already won! 

     One last thing... well two...I encourage everyone to read Matthew 24. It is so applicable to today, it literally explains what we are going through and warns us not to let anyone lead us astray! Also I heard a song the other day that I had never heard and loved it. It is called Scars in Heaven by Casting Crowns and the words are amazing and so true! 

     Be blessed and LIVE,

     Paula

     #lungcancer #stage4lungcancer #beblessed #mikeymo #f*it #amyledin #75hard #andyfriscella #castingcrowns #scarsinheaven #live

     

     

The plan...

     First we want to thank you for all the messages on the blog (sorry I haven’t answered them all, I’m very technically challenged🥴), on FB, IG and in person, we really appreciate it! 

     Mike started on the oral RET gene therapy/chemo drug called Retevmo (brand name), the generic name is Selpercatinib on Friday August 27th. He takes 2 of the bright blue pills twice a day, every day. He has been feeling pretty good so we pray that continues, although I think he isn’t telling me any of the side effects!?! His blood pressure and pulse have stayed consistently good as well. We are scheduled to go to Mayo on Monday for bloodwork, Echocardiogram, and oncology visit. We did talk with someone from MD Anderson but they won’t just review  all of Mikes records to see if they would have any other suggestions and we don’t want to travel all the way there for them to tell us the same thing, so we will continue at Mayo for now. Also, MD Anderson was the hospital that did the clinical trial with Retevmo so we assume they would suggest the same treatment plan.

     We have been staying busy and enjoying the last days of summer. We have been walking a lot, playing pickleball with family, golfing, relaxing by the pool, reading, and enjoying our kids and grandkids. We are works in progress but we try to remember that life is short so we need to make memories and enjoy every moment! When we hear of people recently diagnosed, or people dying from this terrible disease it just confirms that we can’t take a single day for granted!

     I’ve been asked how long Mike will be on this drug and the answer is until it stops working, and we pray and believe that it works a long, long time! ❤️Regardless of the diagnosis; each and every day that we breathe, we are living with and not dying of cancer. (Unknown)

     Be blessed,

     Paula

     

It’s time for action...

7/17/01... The day that changed our lives forever...the day we heard the words “you have cancer”.  Mike has endured 3 thoracotomies, which has left him with about 1/2 of each lung and bad shoulders because they have to dislocate your shoulder to get to the lungs, he lived through MRSA after the first surgery, has taken loads of supplements, done lots of natural therapies, tried different diets and protocols, he’s done low dose insulin potentiated chemo, done a targeted clinical trial, and done more natural therapies to get us to this point 20 years down the road. 

It’s time for action now though because his recent CT scan showed significant growth in at least 2 of the more than 7 tumors in his lungs (multi-focal NSCLC stage 4). His MRI also unfortunately showed 3 lesions/METs in his brain ranging from 2-4mm. Mikes oncologist Dr. Molina is suggesting starting a newly approved RET gene targeted oral chemotherapy drug called Selpercatinib (almost identical to his clinical trial drug Blu). So after his appointment Mike had a baseline EKG done because this drug can cause heart issues, so this would need to be done routinely as well as blood pressure readings (my past nursing skills should come in handy). We are digesting all this information, praying, and talking to our family before we decide what action to take. We may go to MD Anderson for a second opinion.

Life seems so hard right now, and not just for us but for everyone. The last 18 months have us constantly saying “you can’t make this stuff up” or “ it’s always something”. There is such fear, fear mongering, fighting and hatred that it seems like the world as we knew it may no longer exist!?! I don’t have any answers except to trust God’s plan. I have lots of times when I ask “why” but then I remember that His ways are not for me to question. 

The words from one of my favorite songs is “with every breath that I am able, I’m gonna sing of the Goodness of God”!!! Thanks in advance for the prayers, I will update when we decide on the course of action. #cancer #lungcancer #stage4lungcancer #cancersucks #Fcancer #mikeymo #beblessed #eatpraybreathe #goodnessofgod