Hoping for the best; planning for the rest…

Hope For The Best; Plan For The Rest is a really helpful book I recently read that gives you strategies to deal with a life changing diagnosis..

As a family we are still hoping for the best, but planning the rest, because Mike unfortunately now has multi-organ metastasis. He has had some skin lesions on his head and they even identified them on his MRI before his whole brain radiation. Now however, he has some more showing up on his chin, neck and chest (most likely metastasis).

Last week he had a CT scan of his chest and pelvis, and most of the lung tumors have grown in size, as well as several lymph nodes. He also has a lesion on his fourth rib (most likely metastasis) and a small lesion on the head and tail of his pancreas (most likely metastasis).

Mike is having some back pain, probably due to the lesion on his rib and some stomach pain which could be from the pancreas, but we are not sure. He continues to not be able to gain any weight which is to be expected.

One positive is that his cognition seems much better since post radiation. We talked to his oncologist today and have decided not to do any further treatment, because that would take away his quality of life significantly.

There is a new clinical trial at Mayo, but the unknowns of how the drug will affect him and the side effects are just too much for something that is not curative and we don’t even know if it would extend his life because it’s a trial drug. We are aiming for comfort and quality of life.

Mike had a palliative appointment last week after his CT scans and they have added a Butran patch to see if it will alleviate some of the pain he is experiencing. It’s so hard to hear that the person you love most only has months to live if they don’t do any further treatment. Truly, it takes your breath away. Like the air has been sucked out of the room! It’s like an out of body experience or a bad dream you can’t wake up from! No one gave him a timeline and we wouldn’t “listen” to that anyway because only God knows the number of our days.

Mike has had quite a few visitors and we are also trying to enjoy as much family time as possible. We have went to baseball and softball games and watched the kids swim in the pool. We had a nice Father’s Day with almost the entire family here❤️

This is by far the hardest season of our lives and even though Mike has had cancer for 24 years, he lived in a way that you would never have known that he was ill. He has helped so many people by giving them life lessons through his words of wisdom or just by watching the way he handles himself day to day. I know I’m not the only one who will miss his wisdom, knowledge and perspective!

Years ago we listened to an artist named Plum and one of her old songs called Smoke came on a playlist today and it’s so fitting:

“come to me you the tired and heavy

and I will give you much-needed rest.

You are my hope you are my song.

You are the oxygen inside these weary lungs.

You are my safe place.

You are my home.

You are my shelter when it all goes up in smoke… “

A breath prayer that a new friend who is recently widowed sent: As you Breathe in “I don’t understand”; as you Breathe out “ Hold me closely”. I need this because I don’t understand and I need to be held by Him!

Just Breathe,

Paula