How is hospice helping me so far?

Ovarian cancer is such a dreadful disease that sadly I'm still fighting, kicking, and screaming to fight and oh how I wish so much that  I could beat it!  That would totally rock!   It sure does change one's perspective on life and to realize what's really most important in my life right now.  You sure as hell don't sweat the small things anymore and you really do have to laugh a whole lot more.   I know; how does one laugh when one is going through such a tragic time of life? Oh believe me I can find many reasons to!  It's not really all that tragic;  I of course have my sweetie pie honey by my side no matter what; and he is there with me being the best husband and caregiver he can be.   As another caregiver has said; he is in for the long haul and all to familiar with the TPN rituals!

My ultimate goal in this battle for my life right now is to get as many good quality days  in as possible with my sweetie. I'm so happy that he is able to work from home as this so called "deterioration phase" begins. Physically I'm still doing OK in that I can still walk around; getting a few things done around my home like laundry, cleaning, and of course cooking a great meal (every once in a while) for my sweetie.   I also get to take my pets outside sometimes for walks; Tonto loves to go on walks and often cries by the door for me to take him outside!  He doesn't understand that he can't go out all the time because sometimes the neighbors are out walking their dogs who in turn are not too crazy about seeing a tailless cat on a leash.  The feral cats are not too crazy about him either. and he's not at all crazy about them; but they both make me smile and laugh at least many times each day!  Pets are so important.

Today on my little walk with Blue Belle, she has been chasing squirrels like crazy.  She kind of herded this little squirrel and cornered it and I couldn't really do much as this was happening and then all of a sudden the little shit ran up my leg a little ways and I squealed bloody murder and then it jumped off me and then Blue Belle started chasing it again and it started to run at me again and I squealed again as it turned and jumped up a tree; thank GOD!  I can actually laugh my ass off about it now but it was pretty scary.  They kind of remind me of rats and its terrifying to think of getting bit by one or even scratched.  I'm so glad I had on my long pants and not a dress!

OK back to me.   I'm still happy as can be if I can just get any of the above done or just being able to get outside and enjoying some beautiful sunshine! All the great things I know I will miss when this great journey is over.

My dad has been here for the last couple of days and will be leaving tomorrow but he will be returning soon in couple of weeks.  It's so great to have family visiting and  to be helping out around the home.   It is amazing!  Oh and we will be watching the World Series tonight!  I'm super duper happy that our Giants are finally  in the World Series; hell they haven't won one since they were in New York.  OK enough about the sports!

I have also been fortunate enough to have  had quite a few visitors from my job which has been more than wonderful.  God I sure miss them; I have to hold back tears when they leave because I miss them so terribly; coming into work and being around such great people.   Oh how I have been blessed to know each and every one of them! Oh how I love good people!)

So now; how is hospice care helping me so far? Well so far I do have a great nurse, although I still miss my old nurse and wished so much I could have kept her. I had such a horrible time  adjusting last weekend and part of this week trying to control back and obvious abdominal pains (those include hunger pains and surgical pains= I'm not even sure I'm sewn up right inside there?). We finally got the pain under control for once but the hard part about it all is keeping it under control.   I can loose control of that pain so easily; so that's where having my honey around helps me greatly.  

What we are trying out right now in addition to my pain pump is Methadone (2ml per day= 1ml morning, 1 ml at night), then I have this wonderful cream that I can rub into my skin that has a combination of Benadryl, Ativan, and something else? for the nausea but it hasn't helped much for the insomnia so tonight I get to take a regular Ativan (crush it up and  mix with 1ml water) to take under my tongue.  (can't take pills very well).  I also will be cutting down to 10 hours on the TPN to see if the nausea will let down some; that's also another sign that my body isn't taking to well to food. 

My new nurse calls me daily to find out how I am doing and I'm very thankful for that.  It seems each day is a new thing to conquer whether it be pain, nausea, or insomnia.  What is very helpful is that they are trying to get this down to a science in "End Stage Ovarian Cancer", she gets to talk about my case (my problems) with lots of other hospice nurses who in turn offer up genius solutions to help me combat my daily problems.  If she doesn't have the solution; she will get it and I'm very grateful for that.

GO GIANTS!

Peace and Love to all of you!

Welcoming Hospice Care....

Yes, we made the big decision today to go onto hospice care.  We are a bit overdue on this decision but fighting so hard in this battle; we need a break and from what I understand they can help us quite a bit.  Now my cancer is considered technically End Stage Ovarian Cancer?  How completely morbid does that sound?  I'm still going to fight to live each and every day that I am blessed to have as they come no matter what and the decision to go onto to hospice care was definitely not an easy decision to make.  I only hope that I make it till the end of the year (or longer if that's even possible - that would freaking rock!).  No more gifts for me; just prayers and/or healing good thoughts!  I could really use some miracles!   What an understatement!   That's all I need now!  Can't take any of that shit with me and just by others thinking of me makes the world for me.  Thank you all!)

 One cool thing is that I am still able to get out and ride my old lady bike.  Yes, I'm calling it for what it is.  I can't walk for long distances and the bike is so very comfortable that I can still ride it.  All the power I need!

One thing that hospice care will do that makes me feel even better is that they will provide care for my loving caregiver and husband (my sweetie).  He deserves the world!   He has been having problems sleeping and he needs support just like I do.  Caring for a spouse who is facing the inevitable is hard.   He has such a heavy load on his plate in taking care of me each day.  What an amazing man he is and continues to be!  It is so not easy what he has to put up with and I admire him so deeply!)   I know that it kills him to see me in any amount of pain and sometimes I do have to admit that I hold the pain in as much as I can just so that he doesn't have to hear me suffering.  He always makes me feel so good no matter what the situation is; just hearing his soft voice calms me.  OK I already wrote a tribute to him not so long ago but if I get a chance to brag; I will do it!  He deserves that and so much more!

This photo is of Blue Belle and Jagger; a good friend of hers and Jagger's mom.

The decision to go onto hospice care was not an easy decision for me to make because they are dealing with end of life and I guess that's what's going on with me unfortunately.   Many  hospice care workers I hear are ready to speed up the process and I will not at all be about that!   No Way do I want this process to go on faster than ever!  That sucks!  I want to drag this on for as long as I possibly can and I will be sure to make that as clear as possible.   I guess we are a dime a dozen but still!  I'm just not ready to let go so quickly.  I do know that it will happen one day; but like all of you; I just don't know exactly when.   I was not at all ready to go onto Hospice Care last year or even 6 months ago when I have been faced with this decision for so long.

Its weird to see how right that psychology class I took at Indian Hills Community College so many years ago was.  You do go into stages of acceptance when you are dying with a disease.   I think the first was utter fear but it's actually denial.  Oh yeah there was plenty of that!  I wanted to hang on so bad; don't get me wrong I still do.   I did go through anger last year; although I am still a bit bitter about it all? I still wonder "why me"?  Every cancer patient goes through that.  Then there is other thing called "Bargaining" where you think if you do something different maybe the inevitable won't happen to me?  We did the pain pump, more radiation, and then I got good old R2 so that I could try to eat my favorite foods with out having to puke up so much; I still puke quite a bit.  Thank god for good old POT!)  It helps some!  Then there is the depression which is really hitting us both quite a bit.  My honey and I held each other for like hours sobbing together.  Love has brought us through so much of this shit.   We are both getting closer to the acceptance of this but it's still very hard; especially for someone as hard headed and stubborn as myself!  Oh and the beautiful photo above  was once again taken by Elena Zhukova a few years ago.

I am getting my pain pump turned up tomorrow at 2pm and then on Thursday; I think the hospice people will be coming over.  I plan to document as much as I can in hopes all of my information may help many, many others.

I will never forget when my doctor came into my room and told me that he felt my battle should end.  It kind of has; we can't try to kill any cancer (it's taken over) but I am living with cancer (numbing the pain when needed).  Cannabis is a blessing for me right now in so many ways.  It is the best pain killer; sometimes I need more help so I have to go stronger but in the morning hours it works best.   I know it is the reason why I am still around to this day; I got many more years than most would have had with my disease.  I have outlived many other patients and yet this disease is still quite deadly.  I hope in the future that all cancers will be looked at more seriously as they do with breast cancer; we need a cure!  I would hate to live in other states where they would deny you Constitutional rights (helping ease unnecessary pain and suffering);   It seems they give more rights to those on death row?  I am so glad it is legal in my state and I didn't have all the hell that many other patients had to go through of getting arrested or having a gun pulled on me in the middle of the night?.  I have had nothing but support for my decision to use and I am very thankful for that and the amount of time it gave me with my loved ones.  It has been a total blessing in so many scary situations we have faced!

I'm still going to fight live as much as possible;  to have  more of those good days and try to see as many movies as I can.   There are a lot of good movies coming out lately? Well at least I know I won't have to run and take a dumpers during the middle of a movie any more; I just can't eat any popcorn or Milk Duds?  I think that is what they are called.  Milk Chocolate Caramel balls?  Yummie!  Maybe I can bring R2 with me and stomach suck my tummy right after eating those yummy candies?  Well I do know Blue Belle will be sitting there enjoying the movies with me.  What a crazy request because I still have my appetite just can't deal with the pains of this monster eating me alive.  I hope and pray that one day there will be a cure for cancer and that others don't suffer as I do.  Peace and Love to all of you! I hope to post a video later on today!

Oh and I do wish to help these horses if all possible.  They are the result of the female hormone Replacement Industry.   This is Bess Nick and he was born in May 2007. Here is more information on Nick: Nick is a big bold moving horse. He is the most amazing color, a red roan with lots of sabino markings. He is dirty in this photo, we can only imagine how he will sparkle with a good bath! He should do will as a riding or driving prospect. He grew up in Alberta, Canada running in a huge wooded pasture. We brought him to The Animali Farm because he was going to be sent to slaughter. He was in the wrong place at the wrong time, and such a beautiful horse. He is halterbroke only, but is going to be used in the Starter class at Monty Roberts School in September 2010 where he will get some good training.  Please contact Jennifer Johns or Cheryl Forbes if interested in this beauty; animal@aol.com or (805) 938-0174.