[Catherine Wilkins]

Hi Natailie. My dad is 74 and is in a similar situation. First let me say, I’m sorry sister. I understand and feel your pain.
The term chemo is scary for us as well. My father was quite healthy and diagnosed with MDS through blood work in May this year. His red blood and white blood numbers have declined very quickly. His doctor have given him one year to live. I took him to Mayo Clinic and they said even though they agreed with the diagnosis of MDS (RCMD) – they also said ignore the time frame and live every day the best you can. We’ve settled into supportive treatment.
We realize there is no cure but we try to be grateful for the time we DO have.
He tried Aranesp (a growth hormone for 3 months) along with transfusions but his levels continue to decline.
He gets blood transfusions averaging every three weeks and this week we learn that he needs another one (within less than two weeks). He hates the transfusions and now he is considering the next treatment – chemo.
Dad announced in the beginning (just a few months ago) that HE WAS NOT doing Chemo – but as the reality of MDS and dependence on transfusions sets in, we are considering starting Vidaza soon.
I am worried. I worry that the side effects of chemo will make him feel bad. I am told his blood levels may get worse before they possibly improve. At the moment – he’s not in pain. I DON’T want to see him suffer!
Did I mention – he took himself off of all his regular medications (heart, blood pressure and not sure what else) So now I worry because the Chemo increases his chances for a heart attack.
All that said, I have no control. Sadly, neither does he, really. He began clean eating, taking tons of vitamins and drinking smoothies. He stopped eating sugar and all diary. He was already thin and has lost weight. He wants to FIGHT this MDS but there is no fight to be had. Accepting it doesn’t feel right either. I struggle daily and know that a big struggle for him is depression (although he has a hard time admitting it). Early this spring he was busy as usual working on his farm. Now he feels he has no purpose. I know as his blood level drops, his frustration and depression increases.

For me – as a caregiver/daughter – I HIGHLY recommend a book called BEING MORTAL
https://www.amazon.com/Being-Mortal-Illness-Medicine-Matters/dp/1250081246. I am giving a copy to all my friends as I think it’s a MUST READ for everyone!
This book (written by a doctor) as helped me see that we are ALL going to die. I learned that my job as a daughter is to honor my dad and his wishes through this process – even if/when I don’t agree with his choices. I try to help him by doing research, educating myself, discuss options and ultimately giving him the space to make his own choices. That’s how I choose to Love him through his MDS journey.
I TRULY wish you PEACE and ACCEPTANCE with your father. Enjoy your time together. Best wishes….

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