The surrealness of Hospice Care Decisions....

I'm supposed to go home tomorrow morning and I'm keeping my fingers crossed that I will. I am not to have any fevers for 48 hours or else my whole weekend will be in this hospital. GOD I hope not! I'm so ready to go home to my loving family (husband, dog, and cat). They all miss me and I miss them for sure; plus we have Bark in the Park to go to!

My husband had called me this earlier this week to tell me about a social worker who had been trying to get in touch with me. I did tell him I wanted to start seeing a therapist but a social worker? She had left a message on the home phone and my husband called her and spoke with her and he told me that she was very nice and that he wanted me to talk with her too.

When she had tried to see me in the hospital; once I was asleep in my room and another time; I was crying up a fit in severe kidney and intestinal pain; so she was unable to enter my room at either of those times. My husband was very honest with me and he told that she wanted to schedule some time for the family to talk with my oncologist about the possibility of putting me on Hospice Care. I didn't know much about this yet but my husband then explained to me that this might be one of our options to at least think about for the future. I asked if I could just not be there for this conversation because I just don't feel that I am ready for this just yet and would still very much like to be in denial that this disease just might be killing me. I don't like loosing a battle and I don't intend too. At first he told me yes, that he would meet with the social worker and my oncologist and discuss those possibilities but on the phone my Oncologist would not allow it. He needed me to be a part of the discussions. Since things with my health have gotten out of control lately; my oncologist felt strongly that I really need to be a part of this important conversation.

Then later on a nice lady named Patient services stopped by to talk with us about me going home possibly tomorrow which I was pretty excited about. She then talked about one of the social workers that we have known for a very long time and this new social worker for which she is working very closely with. Then the Social worker came into my room just a few minutes later while she was still in the room. We all talked for a few moments and then Vicki needed to go see another patient. I forget this new social worker's name and hope to remember it soon; anyway she told us a little about her working relationship with my Oncologist and really just wanted to know all about me and what I have been going through. She was very encouraging and kept telling me that she couldn't believe what a trooper I am. She had read through my records and was new with working with my oncologist.

My Oncologist is one doctor who would never sugar coat anything and over the years I had really wanted him to in my case just to give me some hope. I like hope in my case but I never really got it from him; it was always the stark reality that one day this disease will eventually kill me; so this is why I always seemed to dread seeing my oncologist. He was honest with us and never really gave me any hope that I would survive this disease and that with each treatment; it may not work in my case. It was always the worst case scenario. Just once I wanted some hope; but that's what you get when you get an honest doctor. We talked to the social worker for about 45 minutes and then she told us that my oncologist would be by after 4pm to speak with us about some options for our next line of treatment. My husband did prepare me that I didn't have much left and I cried and cried. We would be discussing going on hospice care.

Sure enough after about 4:30pm; my oncologist and another of his colleagues came down to talk with both of us. Miss Blue Belle was in the room also to help calm me down because I was pretty upset. He was very upfront, blunt and very honest. He recommended that I start Hospice Care rather soon and that the feedings and chemo would need to stop so that we could prepare for a painfree and dignified death for me. I would have about 6 more months to live. Hearing all of this was so incredibly surreal; we are talking about my death in approximately 6 more months. I was shocked and scared. I felt so weak and hopeless as tears just rolled down my cheeks; I started hyperventilating and my husband sat over me and tried to calm me down by rubbing my shoulders and gently telling me to slow down on my breathing. Blue Belle jumped up onto the bed and started licking my hand which instantly calmed me down and my oncologist would every now and then grab my foot in a very emotional way which also calmed me and to let me know that he cared about me. I was so upset; but this is the reality of living with such a deadly disease. One day we have to prepare for the inevitable; I hope many more women are able to survive this disease and don't get the news I just got today. My husband and I have not made any decisions yet and to be quite honest I'm just not ready to give up on life just yet. I feel like my life has just begun; I have the love of my life, a great dog which is going to outlive me? and cool cat; lots of great family and friends who love me more than anything. I have touched many lives and I hope after I am long gone that I continue to touch lives. Maybe I can write a book in this time about the many other things I have gone through in my life; but apparently I mustn't waste any time. Life if precious.

Now my other options are to continue with chemo and most often with the chemo; well in my case he was right; it's not working and in the CAT scan there are more tumors growing in my groin area; I could try some more new treatments but in reality I am getting to the point of suffering from many infections which are the result of the advanced cancer and the chemotherapy treatments which most often at my stage of the game ends up killing me much faster than the cancer. To me this is puzzling.

Now if I go on to the Hospice program; I may live longer but my oncologist is estimating that I may have just 6 months to live and what I plan to do is to research all that I can on many of the Alternative Ways of making my body stronger in order to fight the cancer. I can do this by getting my immune system stronger.

I saw something on TV late a few night ago watching trash TV only it was Montel Williams advertising his special juicer. I will be researching his juicer and may just get myself one and try it out. I sure hope it isn't a bitch to clean like my juicer is (it currently resides in my appliance graveyard in the very back of my far back cabinets = where I can reach them nor do I wish to). That's why I quit using it. I don't like cleaning out slimy slimy and then when it dries up it's another nightmare to deal with. I want to at least try to get my body to an Alkaline state where the cancer can not survive. I have got to at least try this. So does this really work? I'm so desperate at this point. I don't want to die. I'm going to try everything in my power to live and beat this disease no matter what! I can't leave my husband and I won't! I'm not ready yet! I don't have anything to loose right now by trying since modern medicine has failed me and will continue to fail me from what all the doctors are telling me.

Hospice care will be all about controlling my pain and getting me ready to die. Tears just stream down my face as I write about this but just can't help it. I don't want to die but we don't always get what we want in life sometimes. We can't just change destiny or can we? I'm hoping and praying that I can. Perhaps all the love for me in this world will help change that? I will die trying to fight this disease; I can guarantee that. If you learn anything at all from the blog or my experience, please do be happy for what you do have in life. If could be ripped away from you just like that. Lucky for me, I at least have 6 more months to enjoy. I'm so sad that I may not ever get to go back to my job. I was so looking forward to going back and getting my mind off of all the hell that I have been having to face and to be around all the wonderful people that made me happy and look forward to going to work each day. I miss them all! I'm so sad but I'm not going to spend the next 6 months sad; I'm going to celebrate my life in the best ways that I can. My honey and I will be making a list of things that I would like to get done in this 6 months. Time is precious.

My husband and I Skyped tonight and we cried and laughed and cried and laughed some more. We were trying to figure out what kind of a service I would want and I preferred some sort of an out door party celebrating my life. He was talking about various Churches and being that I am not Christian; he is Catholic so it could be a Catholic church;? I then asked " well what about one of those Cannabis churches where everyone who attends can smoke a joint and be real when they talk about their memories of me? He laughed and laughed. I definately don't want the usual service and oh god I hate even thinking about it, but it is reality and I do have to consider it.

Another place that was high on my list was on top of Homewood Mountain but around 6 months from now it won't even be warm. Perhaps we could hold the ashes until springtime and gather around on the beach. We have so many things to prepare for in just 6 months or more. I'm not going to prepare myself that I will die in 6 months; prayers and lots of positive thoughts could cause those alternative methods to actually work and put me into remission. I may have several years to live. We just never know and I still do have much hope in my heart. This is just several doctor's opinions (6).

The lesson here to be learned is to enjoy everyday that you have and I will continue to. I am so happy to be able to wake up on Saturday morning next to the most amazing man ever. He is in my heart and soul and I worship him like no other. We hope to have lots of fun at the Bark in the Park on Saturday and hopefully for a motorcycle ride on Sunday. No matter what, I will enjoy every day that I get to have for they are gifts. I don't take any day for granted.