WARNING: Some of the Content here may be Objectionable to some. I have this blog labeled as "Adult Only" as a common courtesy for those who may easily be offended by Adult topics such as the Truth, Down to Earth topics, realities of living with Ovarian Cancer and/or any life threatening disease that goes along with it; Sexuality, Medicinal Cannabis, Profanity, and of course plenty of unpleasant body functions are also discussed here. This is a very tough battle for which I don't intend to hold anything back on what I am facing.

This blog is very personal and comes from the heart of a real fighting cancer patient who wishes nothing more than to live for all of those I love my own will to live, and my love of life. While sometimes I might be on heavy medication (prescribed by my doctor) and occasionally I might write about things or subjects that one may never even think about or consider; so please consider that as well. Yes; whacked out things might even be found here; but I mean everything in all good intentions.

This blog is not at all intended for the faint hearted, those who lack a sense of humor, have no idea what down to earth means, greedy mean people, and/or those who don't know how to share the world with others, and especially those who are unable to easily put themselves into the shoes of others. This blog is mostly about my journey of living my life in the best ways that I can under the Golden Rule and appreciating all of the GOOD KHARMA that comes my way! Never take anything in this world for granted; especially family and friends!

Thursday, September 17, 2009

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.



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14 comments:

l'optimiste said...

oh CJ this post was so hard to read even though I was prepared..you are so brave. And so sensible about it. I would love to think I would be the same, but I sincerely doubt it.

sending lots of love - and I reckon the Cannabis Church is the way to go ;o)
xxx

Kia Taylor said...

I'm really angry CJ, I would be lying if I said I wasn't...I went to sleep last night and when I woke I had that horrible realization that things were just as I left the night before. None of us have ever met, but we are all in a club of which you have to be a member to understand...I hate this club, but I'm grate-ful for all of you...when one of us hurts we all hurt...sending lot's of love to all of you!!

MFA Mama said...

Oh sweet girl, I'm so sorry you are having to discuss this at all and can only imagine how hard it must be :( I did want to mention one thing that might at least help you feel a little better; I have an alternative medicine practitioner here (other side of the country) who is a DO (Osteopath, not MD--can still prescribe and such but they take a more holistic approach) and he has me do "immune drips" with potassium and a hefty dose of B-vitamins, C and a little D and some TCM herbal extracts thrown in. These always give me a nice boost and help me keep from getting sick (I am terribly prone to infections of all kinds), and they even help with the nausea I am still battling in the wake of the peritonitis. I don't know if these would help extend your life at all but they might at least perk you up some and help you feel better. You might ask around and see if you can find a place that does them--they take about three hours but it's in a nice room with comfy recliners and blankets and I don't mind it at all, especially since it seems to help me!

lori b said...

oh cj...
here i am crying. so hard to read. and yes, you are so sooo brave.

have you ever considered the clinic in tijuana with the holistic treatment. contreras i think,,,,and i hear good things about it. i checked into for myself, but as of now...my family isnt on board with it. check it out.

also....i know this doesnt help much...but i KNOW there is more to our souls after "death". ive heard waaaay too many stories from people who have experienced it. its out of our realm, so i know its still so scary. i do have solace knowing this. the stories i have heard give me some peace with my own illness and battle.

im not planning on dying anytime soon...but i do sometimes think about my funeral. i dont want any religious service. i want my friends and family to just come and speak and tell stories. laugh...celebrate me! just my two cents. but like i said...im not planning on this happening anytime soon. for either of us! keep on fighting. youll know when its time to stop the fight. and lets hope its in a long while from now.xo

Deb said...

Oh Jayne,
I'm crying right along with you this morning as I read this....I'm so angry right now I just want to hit something......I saw an amazing juicer demonstration at Costco yesterday but I think they only have it until today. The guy was making these super smoothies with it.....
Please let me know when I can visit next week. I have every day available except Wednesday to come down for the day.
sending you lots of positive energy and love!
debbi
you are still the strongest person that I know......

Aroma Fields said...

CJ, I've followed your posts and am so sorry to hear this news. I'm angry at this horrible disease that takes people too soon in life. I believe that, with your passionate will to live, you might just be one who will go beyond those 6 months. Doctors speak "statistics"....YOU are an individual with special emotional ties to this life. My heart, prayers and positive thoughts go out to you as you continue your battle. You are a warrior and I admire your strength. I hope I'm as brave as you are when my time comes. My doctor (like yours) doesn't give me any hopeful information to cling to, either. But, we are lucky to have the forewarning that allows us the time to say the things we want our loved ones to know. Others, who are snatched suddenly from this life, don't get that.

Sending warm hugs your way.

Marilyn
Diagnosed: Oct 2008 pancreatic cancer

Paul Cacciatore said...

Dear CJ,

I just wanted you to know that you are in my thoughts & prayers. And, I was truly touched by your honesty in this post. The post must have been extremely difficult to write, but many will benefit from your words. I have followed your blog for quite sometime and believe in the poignancy with which you write. It is my greatest wish that you will write a book -- a book that will help women battling the disease, a book that will help friends and family of ovarian cancer survivors, and a book that will teach anyone with a heart beat how to live life fully. You have been, and always will be, an inspiration to me in the fight against ovarian cancer. Best, Paul.

Daria said...

I am so sorry for this latest news ... I've been following your blog and think you are an amazingly brave gal.

Sending you love, strength and courage ...

POD said...

ohmygod...I just had to write that. I have tears and I don't know you. I decided in 2001 that choosing to go into hospice has to be by far the absolute most difficult decision a person must make. Most especially a person who's so young.

But YOU are the person to make the decision and hospice workers won't force you to do anything. The reason I know this is because my husband at age 50 went into hospice (colon cancer) (2001) and we were with them for several months. The reason I would choose it (uterine cancer) is I would want their kind of support, the kindness, the love, they have chaplains and social workers and you name it to help you. If you are struggling, they are there for you.

I have started the very beginnings of buddhist study because of the buddhist point of view on death and dying. There is so much suffering in the world and the idea of compassion and love and meditation and giving tong len to a patient is the way I want to go.

I am right over the mountain from you. Actually Los Gatos. If you want me to call you, I will call. If you feel too overwhelmed, let me know. Let me know what I can do for you if anything. My heart goes out to you and your family and your husband and dog(s). This is a difficult decision.

I met a man at a book store who told me not to think of suffering as the rug being pulled out from underneath me but to think of it as a magic carpet ride. I think the scariest thing about death is the word death (and fear of the unknown) but if someone would call 'death' anything but death, we would feel less fear. Call 'death' - cheese sandwich and some of us might even sign up.

Please let me know if I can do anything or if you want to talk. I volunteer with womencare in santa cruz. They would talk to you also. A wonderful group.

Much love to you. contact me at pod1739(at)gmail

Anonymous said...

I have been following your blog for some time now. I cried as I read your post this morning.

You are an inspiration to me and I am sure to a lot of other people.

I am praying for you. You have touched a lot of people and your work is not yet done.

Lauren said...

Hi CJ,
I've followed your blog for the past few months, and you have no idea how much of an inspiration you have been to me and to others. I feel immensely saddened by this post, but I did want to let you know that your strength and courage is tremendous. I'll be thinking good thoughts for you.

Lauren

Maya said...

CJ, I cannot imagine what you are going through, I don't know you but you writing has touch me and my heart goes out to you
I recently fare welled a friend and we all gathered in a beautiful place to talk about how she impacted our lives and partied with lots of music and food as this is what she loved the best.
Dear CJ there is no magic formula, it is YOUR life and it is YOUR death, make the most of it and be grateful for each moment.
There is nothing that you need to do except be as happy as you can and love your nearest and dearest. I send you my love,
Maya
PS: cannabis church sounds like fun :-D

Ovacom06 said...

Cancer is so unfair and unpredictable. CJ Never give up HOPE! This may be your time for a _______! (you fill in the blank) Sending you healing thoughts and prayers!

Brandy said...

CJ,
I have followed your blog, and I am so sorry to hear of your news. My best wishes and prayers goes out to you and your family.

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Disclosure

My techniques and treatments work simply for me and may not produce the same results for others. Cancer is a very tricky disease in which it is very different in everyone it touches. No two cancers are the same just as we humans are not the same. What works for me may not work for others.

I love life and expect to live for as long as I can. I intend to use those treatments that do work for me which includes medicinal cannabis. I'm still alive with this disease over 7 years later because of this miracle plant and as long as I have my medicine available; I intend to survive many more years. I hope one day the Federal Government will eventually grow up and be led by true leaders who represent the people and not just coorporations; real people who live by the Golden Rule "treat others how you would want to be treated". I also hope the Government of the US can finally learn to admit that it has made a mortal mistake in making this life saving plant which is provided by GOD and does indeed have the ability to provide all of us with food, fuel, clothing, shelter, and medicine; a mistake that have made is that it is illegal. Yes, it was a mistake out of greed, ignorance, and racism that this miracle plant is illegal. This is a confirmed fact and we should all know and face it.

Cannabis is not at all harmful and in fact quite the opposite. Perhaps our economy can once again grow as it has in the turn of the century by making this life saving plant legal once again.

The contents of this blog including all images, (except images from third parties) and the name "Shopping Kharma - what comes around goes around" belong and copyrighted to C. Jayne Armstrong 2008-2010
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