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!

Severe Bladder Infection, bowel kinks, and extreme vomiting....

Well I was so excited that I would be able to shorten my time on the TPN from 16 hours to just 10 hours. 14 hours of freedom compared to just 6. That's good right? Well wait till you read the rest of this post. We had quite an all nighter and pretty much most of the day; a severe scare that I would need to be hospitalized. I probably should have been hospitalized but this time my husband and I were both being stubborn. We felt together with our power, we could easily get these fevers down and at least try to control the severe pain. I'm getting fevers, horribly painful blockages and having to utilize the pain killers like nothing else.

Well I had to go see a doctor on Friday afternoon about my bladder infection and to see if I might need to schedule surgery to replace my ureter stint. My doctor had not replied back yet to my email so I felt I had to do something; it was about to be the weekend and I needed to know for myself if I'm OK; so I went to see a primary doctor.

Miss Blue Belle came along too and it isn't a surprise that she was such a good girl. While we were walking down the hall and into the waiting room (she had on her working dog vest) a little child ran up and smacked her on the bottom and then ran back to his family. It was shocking but I told the child "this is a service dog and you don't just run up and hit a working dog". The parents apologized to me and then I showed the child how to properly pet a dog and why it is so important to not hurt an animal. She didn't do anything wrong to this child. He was maybe 3 or 4 years old. I would have been quite embarrassed if I were the parents of that child so in a way it kind of relieved me that I'm not a mother to a child like this. One time at Santana Row a little Indian girl walked up and kicked Blue Belle; that was shocking too. In both instances; she didn't once try to bite or hurt the child; just acted like she did something wrong; it hurt her feelings and she didn't understand what she had done wrong to deserve this. I told her; "Good Dog" both time because I can tell she knew she didn't do anything wrong and that her reactions were appropriate; she didn't bite or hurt either child. She is such a good dog.

This is not a very flattering photo of myself here, but it is the reality of how I felt at the moment waiting in the doctor's office. I had to provide a urine test and boy did that show serious infection. The doctor told me herself "boy you really do have a raging UTI infection!". The doctor prescribed "Septra" for my infection. I went to go pick it up and the pharmacy was ridiculously packed full of customers; it would have taken me the rest of the afternoon to wait. I needed to go back home and get my TPN to be reprogrammed. Yes, two trips to the hospital in one day.

This very nice doctor did tell me that my doctor had just replied to my email and she was able to read his comments (a reply from just a few minutes ago). Well anyway, the stint can stay for another 3 more months which is awesome. I was really worried that I would have to do this literally every 3 months; well now every 6 months isn't so bad. My surgery will be scheduled in December.

Well I was still feeling like total shit; in severe pain from a blockage and I had not been able to go the bathroom (#2). My stomach was just starting to swell and the pain was very intense. While I was sitting in this doctor's waiting room; a nurse handed me a bag containing my urine for which I needed to drop off at the lab. Well this lab was so crowded and I grabbed a number and it 43 and they were only on 16. So judging from the speed of service; I decided to go to the main lab downstairs. It wasn't nearly as crowded. They were on number 63 and I had number 65. I was in and out quickly.

I went home and rested (took a nap) and then packed up my TPN and went alone to the infusion center to get my TPN reprogrammed and get my blood tests for chemo on Sunday. The hours somehow had changed in the lab downstairs so I just dropped off my TPN for re-programming at 6:30pm while I went and got my blood work done (before the lab closed at 7pm) and then returned to pick up my TPN and get the picc line dressing changed.

I went home and didn't have any appetite to eat; in fact I felt incredibly nauseated for most of the evening; like I was going to vomit but didn't want to. I just lied there on the couch trying my best to be as motionless as possible just so that I would feel like vomiting. Then at around 3am on Saturday morning, I vomited quite a bit but it wasn't that green shit. It was foul smelling and the most horrible tasting and it burned my throat like hell. The taste was like no other; kind of like I had eaten a tree? I couldn't do a thing to stop it and this had started again a few hours later. I cried and cried because the vomiting just would not stop and it was totally annoying for my honey (I could just tell) but he still wanted to know what he needed to do to help.

Finally the next morning I was able to go poo and the pressure in my abdomen was relieved; I still had quite a bit of pain in my abdomen from all that vomiting so I had to use the liquid morphine to rid myself of that pain. It was horrendous and I don't think I could have handled vomiting like that ever again. We felt we were out of the woods for most of the day and then the evening hours crept up and my fever went back up to 101 and we got it back down to normal but then the nausea started again and I stayed on the couch for the rest of the evening....

To Be Continued....

Getting used to my new body...

Well this weekend had its rough moments in that I am having trouble gaining weight; instead I am loosing weight. I haven't quite figured it out yet, but my system seems to be running much faster than usual. After about 4-5 hours after I eat anything; then I get severe abdominal cramping and then the severe diarrhea.

As of now it feels like glass coming out of my ass but I am so very thankful everything is working but the pain is getting more harder to manage. I was taking the Vicodins purely for blocking the diarrhea but it wasn't helping at all with the pain just making the cramping pain more severe. I just started smoking my joints once again and this is working like a gem. I can not believe it!) Why didn't I do this sooner? It instantly calmed my tummy down and I was able to relax from the full stomach pain and cramping. The razer blade feeling in my bottom also was aleviated. Thanks to this wonderful natural growing plant which I hope and pray will become legal one day. No one has ever died from this miracle plant and I bet it could build our country strong once again.

My tummy fills up much faster than I am used to and I haven't quite figured out the size just yet (or how much I can actually eat) and have been having a hard time eating and then being too full. My doctor wants me to eat more protein and to eat several times a day. After I eat, I end up lying down on my back for hours waiting for my tummy to digest and still leaking out of the gastric hole. It is starting to heal some but still smells like puke. How weird is that?

My honey took me out for breakfast on Saturday morning and I got to have some hash browns and french toast which totally filled me up. I ate maybe a third of my plate and was so full my tummy ached. It felt so good to get out of the house and to see the public once again. I have been cooped up all week for fear of getting any kind of cold. Lots are going around apparently and that's the last thing I need right now.

I am finding that I have more energy but am still loosing weight. I weighed myself today and now I am at 116 even. My honey is worried again about me and I will need to make an appointment with my internist to see what he can recommend for gaining weight and dealing with this upset stomach. I am so very thankful to have those tubes out of me and just starting to heal. Tonight I plan to eat some marinated blackened chicken, mashed pototatoes and gravy, string beans and corn. I will be breaking it up and having 2 dinners in hopes this will help me gain some weight.

In a couple of days, my honey is threatening to take me to one of my favorite restaurants in the City "Squat and Gobble". They have the best crepes and so fattening which what I need. I love their teas, salads, soups of course their crepes. What's cool is that I can take it home and reheat and eat later and it tastes even better!) I have to wait and watch my bowels to see if I could handle just going to the city. In my 20's, I used to live in the city and also right down the street from this very restaurant (Lower Haight) and boy could I put that stuff down. I could eat an entire crepe and plate of their country potatoes and a salad. I couldn't possible eat even a 10th of what I used to eat before my metabolism has slowed down.

My doctor has told me that eventually my bowels will start to act normal but they are just waking up and happy to be home!) I'm just getting through this little rough patch as you witness!)

On another note of feeling great is my president for which I am so incredibly proud of. I watched several of his speeches this week and it really inspired me and gave me so much hope. All the pain I had been feeling did not matter. I forgot about it and entered into a world of nations who are working together to improve situations all over the world. I could not have felt prouder when I watched those speeches and of course the first lady when she spoke with those school girls in England. It was both heart warming and soulful for me to watch. The speeches really gave me hope that matters will not be handled with guns but with talking, compromising, and working together as a whole world should; not closed doors and fear mongering but with diplomacy and communication. This is the news I like to follow because it always tends to give me hope that things will turn around. We all matter now and what we do to make this world a better place to live. I feel my writing will help many and of course working on my actions as I heal.

My big dream is still to get Miss Blue certified so that I can help visit those who need her most. I see her healing powers everyday and if I can bring her to a few places (veterans hospital, convalescent homes). I feel we could all do something to help each other or someone who really deserves it. Giving really does feel good much better than buying something you really don't need.