It’s nighttime as I sit on the sofa in the living room watching Lennie sleep. Outside the rain is pouring straight down; something that has always amazed me here in Hawai’i. We are on the windward side of the island, so named because of the constant ocean breezes. It is windy here, yet when it rains the rain comes straight down. I watch it cascading down the roof and flowing into the rain catcher at the back of the house. All of the louvered windows are open and the only sound is the pouring rain. I am just sitting quietly in the dark after turning off the TV and the lights. I knew Lennie wouldn’t get to see the whole movie; he can never stay awake long enough. But I know that when he is asleep he is not in pain.
We signed up today for Hospice in-home care. This is a not-for-profit organization that we won’t have to pay for. Lennie will get a nurse twice a week and an aid worker to help him shower and clean up, also twice a week. There will be a manager that will look in on him and a social worker and he is on a list for a volunteer who will come over and visit him and read to him or just keep him company. His pain medication will be provided. This is a free service for people who are in an end-stage illness. We signed up for it because it was free and I didn’t know what else to do while I am away from him. How else would he even get someone to change his colostomy bag?
Someone asked me a few months ago if I cry. I told them that in the past year I have not cried at all because there would be plenty of time for crying if Lennie doesn’t make it. I cry all the time now. I cry for him; I cry for myself; I cry because we signed up for Hospice care, but most of all I cry for the loss of our hopes and dreams. We had planned such a full, happy life together and now all I see is his will to live slipping away. There are moments when I think that hope has been renewed in him, but they fade quickly as the pain overtakes him.
On Saturday I bought him a present: a walker that I got at a garage sale for two dollars. Hawai’i has the best garage sales and how my heart ached for him to be with me the way we use to be. It was one of our favorite things to do. We would get up incredibly early on Saturday mornings so that we could be the early birds at the sales. We have furnished our old Hawai’ian home with the treasures that we have bought off other people’s lawns. The walker was my last purchase.
When I showed him the walker it made him happy. I told him that he could not use it in the house; this was to be his motivation for getting up and outside and walking. He tested it out Sunday morning as we walked down our long drive and across the street and back. It tired him out because his hemoglobin has dropped again to 8.6, but I think that it also energized him a bit, because about half an hour later I saw him walking around the outside of the house, something that he hasn’t done since we arrived here 3 weeks ago. We must be two of the palest people in Hawai’i as neither of us go outside to just enjoy the sun. I showed the walker to the nurse that came over and she thought that they could do one better and provide him with another walker that had a seat so that he could walk even farther and sit down to rest when he got tired. This also would be provided by Hospice Care free of charge. This is a welcome gift of help after spending what I have estimated in the past year to be approximately $130,000 on his treatments, surgery and all other items related to his cancer. We are not only watching his life teeter on the brink, but also our financial future. We now have to play catch-up as we started to use our mortgage money for treatments and fell behind on bills. This is the reality of getting an illness if you are a United States citizen without health insurance which comes at a very hefty monthly premium.
So this walker, a symbol of a fragile and an aging body, seems to have
given Lennie hope once again. I told him this morning that I believe he is getting his mojo back. He asked me what I meant by his mojo. I told him that it meant finding your groove and getting back your sense of purpose in life, or coming back to life after being apathetic. It is that eternal spark of life that gives us the hope to go on when the odds are against us. Mojo is what made Steve Jobs live 8 years with pancreatic cancer when the ‘experts’ said he would only live 1 year. Lennie promised me as I started to get ready to go back to Canada without him, that he would try and walk every day. He would not only use his walker, but he would become a walker. This may have been the best two dollars that I have ever spent.
Kathryn