Update 4/22/09

Thank you so much for all of the gifts of love given to me since the blog was posted: kind words, calls, visits, food, cards, gifts, poetry, flowers, pictures, stories that link us, your feelings, and the myriad of prayers offered. Each one touched me in a very profound way. I feel the passion of life through you and am so glad I share my life with you. THANK YOU!

I’m going to try and capture the experiences of the last couple of weeks with you the very best I can. But first, let me share some words from a book that our friend Nikki gave to me, “Graceful Passages: A Companion for Living and Dying.” I’ve blended a few of the passages and made them speak for me, at this very moment I sit writing to you.

When it comes to dying, I’m an amateur. I haven’t done it – I think when I come to do it, I will still be an amateur, somewhere between frightened and terrified. I know that everything I have been in my life will come before me. I will need comfort and reassurance, and certain things I know will help me die. One will be the thinking about my family and friends, and the love that I have given and received. I will also think about all the beauty I have tasted, and the beauty of the world, knowing that no matter how old I am, I will lament leaving the wondrous beauty of this world. I’ve been a person who’s been on a religious quest my entire life. This is not new with me; I was almost born doing it. It is the deepest experience I have that whoever it is that I am, however it is that I came to be – through the DNA , the process of coming through my mother’s womb and into this world – there has always been a sense of guidance and purpose both behind and before me. Even when I have been in despair, there is something deeper down, some kind of trust beneath all the doubt, beneath the anxiety, beneath the fear; I am encompassed by that great reality that I call God.

Hospice Meeting: After meeting some of the hospice staff and through getting to know them and letting them get to know me, I discovered I didn’t know how to answer some questions posed to me. It was okay that I didn’t have the answers but what bothered me was that I just could NOT hear my voice any longer. It was lost. My mind was blank. I then began to sit back, watch myself and my interactions leading up to these meetings and discovered that I have been in a whirl of loving people who are scared to let me go, want to say goodbye and for whom I’ve also wanted the same. But underneath all of that came the not-so-obvious truth: “….And, I’m hiding so I won’t feel.” When I started asking friends and family to give me some space, my voice was shaky, timid and sort of like a question instead of a statement, “I need time to be alone?” A week ago, I learned a lot about saying no. Here I am on one side having anxiety that I won’t be able to see everyone before I die because time is running out. Maybe you feel it too. There will be plenty of time. Trust me. I found myself thinking, I have this to do, that to do, I have to go here and make sure someone gets this and, and, and, and, the list will never end. It never does really. All of the sudden my spirit screamed: STOP! Then, I got really, really, really quiet and meditated and prayed. And more and more became revealed to me each and every day that I found some silence in my life. I had to create a space to cry and scream, experience deep depression and remember great joys. I had to throw my head on the pillow and sob for hours and then when I thought I’d never be able to laugh again, a laugh emerged. I’ll be bargaining with God one minute, and be filled with anxiety and remorse the next, I never want to leave this beautiful earth and it will be really hard to let go of the passion I’ve possessed since birth for life. It’s unfair and, at the same time, why NOT me? Then there are these questions and curiosities about what’s ahead for me. I’ve met with a pastor, a chaplain, read Jewish literature on dying, I’ve watched films about people dying, and the really personal philosophical and spiritual questions are like angels swirling around my head and mind right now. It seems like the born spiritual seeker I always was is still lingering out today. And, they say you die as you live so it shouldn’t be much of a surprise, after all, I know I’m a passionate soul. I’m afraid and I’m not afraid. I know that God is carrying me right now. And I relate all these musings to the reading I used at the beginning.

My deepest and most personal hope is that I can find some serenity and acceptance in the end.

To do this, I asked some of my hospice team to come and meet with my family and a friend of mine. It was there in that meeting, in the living room, with the shadows from the trees bouncing off the earthy yellow walls, the shadows that come around late afternoon that my loving family gathered. I expressed through tears how I was feeling and in return I heard their feelings. I felt honored to know that I was loved and how I was loved. I am glad that we all removed our masks and let each other “be,” no matter where on this journey we find ourselves on. I was able to tell them that I needed time to be alone in order to listen to how I feel and come to my own understandings. You know, that must be hard – as I reflect now while writing – because there is the buzzing anxiety that goes on day to day, sometimes minute by minute, that say’s…we’re running out of time.” However, I know my body and I know my limits and I truly believe and hope you trust me on this: there IS plenty of time.

We’ve devised a “plan” so that I can see all my friends and family while still getting the rest I need (and I do need a lot of rest). It takes energy to live and die! A plan also helps me get the time I need to grapple the questions that I find myself asking. One of my oldest and dearest friends, Sharol, has offered to initiate and control that plan. Thank you Sharol! She set up a calendar of visits so that if you want to come and see me you can email her and she will schedule it. I take a lot of medication in the morning so after 1 pm is the best time to see me. I am usually good for an hour before getting that fatigue or pain feeling. That way, I can spend quality time with each of you. Something I’d much rather have! She also has a list of foods that both Nancy and I would welcome IF you want to bring food which many of you have been doing and we thank you for that! Your hearts are so good! Our freezer is so small and there are some foods I can’t eat anymore so this helps solve both those problems while still enjoying all the love you send through the food. Thank you! Many of you have offered to do things around the house or to do other things that make our lives easier and we also want to thank you so much for that! It’s been difficult for me to say “yes” to any of them but I’m learning. Sharol also has a list of things that if you want to help we would welcome. It would be a huge help to us and I want to say in advance thank you for all of your kindness, goodness, love, and compassion in all you have shown Nancy and I. I just don’t have the right words to express my love and thankfulness to you. I sincerely hope you feel it though.

My wish for when I spend time with you ~ Please,
*Don’t tell me to try a different treatment, or to not give up. I’m trying to learn to let go.
*It’s okay to cry, I’m doing it too. You don’t have to pretend to be tough for me!
*Pray with me, read to me, sit or lay quietly with me if I fall asleep
*Laugh with me
*Don’t bring your cell phone.
*Don’t bring other people with you
*Don’t feel bad if you just can’t come
*Leave chaos and craziness and gossip at the door.

And, it’s okay for us to make mistakes and say really stupid things because I do it all the time. It can be funny. Case in point: My friend’s dad died of a heart attack and she said, “That would give me a heart attack!” we both broke out in laughter. I said, “I’d rather die than…” Again, too funny. Be yourself. I can’t think of anyone I’d rather spend time with than YOU.

Thanks so much for all you’ve been doing for me. I love you soooooo sooooo much! I wish I had the energy to throw a big ass party to celebrate life with all of you and all the fun I’ve had (and keep having) because to know you is such a gift. I want to fill my house with all of you and for you to get to know each other because you are each so special to me and life is so wondrous and beautiful with you in it. Thank you.

Loving you until next time,
Katherine

PS – Sharol will soon be emailing you with the schedule, the list of things to do and the list of foods.

Kath's Update

On Wednesday, April 8th, Dr. Ellis gave Kath a six month window of time to live. We're getting a lot of questions, and people want to talk, so we decided to create a blog. So if you want to make comments you can.

Dr. Ellis said Kath's liver counts and tumor markers have doubled, and she has an enlarged liver, which is pressing on her other organs. She has large levels of ammonia in her liver, which makes her feel extremely sick. Katherine has decided not to do chemo, because she has had minimal results and wants to live the rest of her life with quality, instead of being sick. She sleeps more, and we need to respect her time, as she is resting frequently.

We have a meeting tomorrow with hospice. They're taking care of everything, including prescriptions and pain treatment. She has chosen to do hospice at home, so she's able to spend time with family, friends and the dogs.

We apologize for the delay in replying to emails and phone calls; we're overwhelmed right now and are trying to spend time together. We appreciate your love and support, and hope you understand.