A Small Beam of Light, off in the distance.

DustyMark's Journey, Uncategorized

Don’t get me wrong. We’ve not given up..because we really haven’t started yet. Thats really the big issue. What is with the waiting? Mark is frustrated. I’m frustrated. All my friends I have spoken to and love us..are frustrated. We are not really laid back kind of people. Some days I wish I was, but in this situation I’m glad I’m not.
So…one of my college friends (we were in each others weddings) has a sister who knows a gal who.. (you know how this goes. I dont’ know the connection. There just is one!) My friend reached out to this woman who has devoted her life to kidney cancer research. (kccure.org). She gave her the cliff notes on Mark and that gal got back to her right away and told her to have me contact her.

When we were at dialysis I read Mark the email I got back from her and he felt encouraged. Just about that time he was on the phone with the local oncologist office that we were told to follow up with when discharged from the hospital. They told us on Monday that Dr would talk to the Mayo Dr and then we could be called back. That never happened so we followed up today only to find out that conversation never happened. I don’t want to sit here and complain…basically, we are not an established patient and our consultation to become one is on the 27th and he can’t see us sooner. I think Mark and I decided when he hung up that this is not where we want consultation on his current situation. When we got home we had a video call with the gal from kccure.org and she advised us to go to U of M and see a specific doctor (the name is long and I’m too tired to look for it again, I’ll tell you later). She is a patient advocate and was in our shoes 8 years ago with no direction for her husband and her life mission is to help others get information and get direction so they can seek care sooner than later. She is helping to expedite an appointment with a renal cell carcinoma expert. I can keep you all updated on that as it unfolds.

Mark had another very long and therapuetic massage here at the house and I really hope that helps him sleep better and ache less. Last night wasn’t too bad. I mean that I wasn’t woken alot so I assumed he slept better. When I asked him how the night was, he said he was in pain all night. It just doesn’t go away. I worry that with each day passing and no talk of treatment…that we are losing time.

Tonight we started watching The Truth About Cancer and it talked about the history of chemotherapy and why its so toxic and so bad for the body. I knew this but was hearing it again with new ears. Mark was listening (I thought he was sleeping) and he was very discouraged. So I had to encourage him that the whole point of this series is to lead you to other options. Plus the video is 7 years old and they have progressed in medicine alot in 7 years. I’m not pro chemo but it’s not my body. However, I told Mark we have to at least come along side medicine with a holistic approach and do all we can, especially when nothing is happening. We shut that video off and went to a more uplifting one that talked about juicing and the power of healing food, some of which we are already doing. So that will be a long journey but I have juicing carrots and organic fruits and veggies ready for breakfast!

We drank our dirt tea tonight and went for a short walk.

Quote of the day: “my kidney hurts so bad it feels like its going to burst out of my body like in alien”

I want to start thanking people personally…but I’ll end up leaving someone out and I don’t want to exclude anyone because I appreciate everyone. So thank you to the meal fairy, the grocery fairy, the laundry fairy, the clean out the closet fairies (those come in pairs), the cookie fairy and her delivery man, the pizza fairy and the massage fairy. That’s just today!

Somehow in all of this I am remembering to do important things like paying taxes..but not remembering when I made dog grooming appointments even though I was reminded 5 hours prior. Sigh.

I’m considering juice fasting with Mark. Some people shave their heads when loved ones lose their hair, others sympathy juice when their spouse juices. (except I enjoy it!). I probably need it too. I’m considering…I haven’t decided yet.

Just wanted to keep you all posted….so many of you are reading along!

The song is stuck in my head. The Goodness of God. Cora sent it to Mark and he has been listening since. Thought I’d share.

It might make you smile..it might make you cry.