Saturday, September 10, 2011

We have made the decision to stop treatment, which just seems to be tearing me down and not affecting the cancer. We switched to Hospice and they are wonderful. No more doctor's visits because she comes to us. Nancy, our nurse, says we are focusing on getting my immune system built up. No more blood draws or scans. With treatment out of the way, I can focus on getting my immune system strong enough to take it on. I can get my yoga practice going again, which will help physically, mentally, and spiritually. I have a portable pump that is giving me regular doses of Dilaudid into my port and can push the magic button to get a dose every ten minutes. Dilaudid is like morphine only stronger. Next week we'll work on using just the pump and ditching the patch. We have Maria in to clean and often do our laundry, so Hospice is going to send us someone on her off weeks! I have a nurse on call 24/7 so no more ER visits or hospitalization. Nancy had Casey making homemade veggie/chicken broth yesterday and it's delicious, full of good things and made with love. She says I've been eating incorrectly so she's putting me on the right track. I started vomiting pretty much the minute I got home from the hospital, so first goal is to break that cycle. Second is to get well enough to be up and around more. Yoga! I can't, however, go to a studio because my blood counts are so low. Casey and I are going to be practicing both yoga and meditation together.

Hospice no longer runs out after 6 months. Nancy works through Marian, which is a Catholic hospital, so they will find someone to cover the 10% our insurance doesn't pay. They have their own pharmacy so they will be paying for my medication. The services will increase as they become necessary. They'll send some to help me shower and dress if needed. Hospice is amazing!

I am also filing for disability retirement and will officially not be returning to teach, which is just breaking my heart. I need to devote myself to wellness care and hopefully can having the best quality of life possible for as long as possible. There is more cancer growing in there, in an inoperable spot, which I am actually relieved about that. The last thing I need is more surgery.

What I'm saying is my cancer does not respond to treatment, and my cancer is incurable. There are a lot of women living with it as a chronic disease for years. I believe that is within my reach. We are not giving up, we are changing the goals and the focus. Don't count me out yet!

What can you do to help? You can stay happy and positive, As my friend Susan says "Courage is contagious. I am happy to receive phone calls, FB messages, emails. Don't be afraid to get in touch. I am not sad, I am feeling a lot better. OK, I'm sad sometimes but I'm not going to be falling apart. Casey and I are going to Big Sur stay Ragged Point Inn, where we spent our honeymoon. Next we will definitely head up to Eureka. I feel like I need to go home and I really want Casey to see the really beautiful part of California.

We will be having a party here at our house soon - maybe for my birthday. We need all you boys to come back and bring those instruments and play music with Casey. We are going to put wood flooring in the guest room and hallway so it will be fit for guests. We also have a double bed frame from the Ranch and we're goin gto put another bed in there. Bella still occasionally poops in the house. Bummer! I'm hoping to put those floors in the downstairs TV room, our room, and the pool table room. We have a Home Depot credit card, so we'll do a room, pay it off, and start on another. We have a leaky basement and roof that need to be addressed. I want to get this house in good shape so Casey can sell it and make a profit. This house is way too big for him, and at some point it will just be Casey and Bella because our Benny dog is getting very old and feeble.

So, don't cry and get all sad. Who knows - I could have months left or it could be a few years. Nancy says I will know when time is running out and I feel nowhere near that now. If death comes sooner, remember I've lived for 50 very happy years. I loved my childhood, I loved being married to Jack and I don't see our divorce as a failure. We had many happy years together and we have stayed friends. I have two big regrets - I was hoping for Casey and I to have 30 to 35 years together. I hate the thought of leaving Cate, my beautiful niece. I love her so much and we have a strong bond. I know I will see everyone when it's their time, and I will be with mom and dad. I always told her I wanted her to meet me with Duder, my beloved cat, in her arms when I get there. Molly Jones and Margy, too... but not in her arms! :)

I got to live my dream, which was always about teaching. It helped so much with my inability to conceive. I did not get to experience motherhood this time, but I have loved many kids and I have loved having them in my life. I have Cate, whom I consider to be partly mine! I got to have relationships with my friend's kids, knowing them from when they were still in their mommy's tummy. Peggy and Kirk's 3 kids feel like they are partly mine, Susan's 2 kids, the same. I got my baby fix when Terez's kids were babies and that also helped quite a bit. I did not get the baby I dreamed of, but like cancer I didn't let it ruin my life. Trust me, life is too short to be unhappy.

Keep those prayers, intentions and positive thoughts coming our way. I saw a bumper sticker somewhere that said "Cancer is love." I have found that to be true. It has brought me closer to everyone in my life, deepened my love for Casey and his for me. I love my community. People get in touch give me the gift of their love and support. Not many people get to know, while they're still alive, how much they are loved. It's a powerful thing. If love healed cancer I would have been cured already. I was sick for probably 5 or 6 years before we got the diagnosis, so I have really not been well, except for 2010 where I had a brief reprieve, and Casey and I got married. I don't want to continue treatment and feel bad for the rest of my life. It's all about quality of life. When we had the talk with Dr. Spillane and made our decision, the first things Casey said to me when we walked outside and said "I'm so glad we got married." What a guy, huh? A lot of marriages break up under the cancer strain, but it has made us stronger.

I have written a very long post, I fear. There's been a lot of things waiting to come out!

Namaste, Jill

Here we are this morning. I don't look unhealthy or unhappy. Neither does Casey. It's all about the love, now!