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!

Gaining Weight...Finally..

Here I am on the couch in my latest creation and with Miss Blue Belle. I'm recovering from severe spasms. I have a cool Peace sign tied t-shirt and then this Peace Sign head wrap!

Well I will start with Tuesday: I did go to see a Psychiatrist on Tuesday morning; mostly just to make sure that my head is clear and that all of my thoughts are normal for someone who is going through what I am with this disease. I feel that my head, heart, and soul must be in place in order to be strong enough to fight this horrible disease! It's just that my emotions have been running quite high lately.

I have been crying quite a bit lately; mostly out of the fear of dying with this disease. I don't know why Death is so scary for me.? I'm not even close to being ready for that! I don't imagine that there are too many of us who are. It's supposed to be just another journey in life; but I don't feel I am ready for that yet! I'm way too young! I don't even understand why so many families are killing themselves over silly bills and money? How could money possibly be worth more than any family? It breaks my heart!(

I have to say honestly that feeling of dying is the absolute worst. I even cried to the point of having an anxiety attack when my husband reminded me that I needed a will. I cried even harder than ever when he suggested that he needed a will for himself in order to protect me. I honestly don't even want to think about loosing him because just the thought of it; rips my heart and makes me cry like a baby every single time. If I ever want to have an anxiety attack; just think that way! It's a hard denial thing to even think about to loose the love of my life.

I can't imagine what so many women and men have to go through in loosing a loved one like that and how hard it must be to pick up the peaces and to move on with your life. It's just one of the things I try not to think about and it scares the living crap out of me. I don't think I could do it. Loosing any family member, but for me; it's my other half. I love him more than I love myself! I do love myself; don't get me wrong; but I would happily take a bullet for him if it ever had to come to that. Ideally, if it were to come to the end of our lives; I would want to die a second before he does just so that I wouldn't have to live a second with out him. These are just a few of the things that we talked about. So the answer was "No" I don't wish to kill myself and "No" I don't wish to kill anybody. Those are kind of the obvious questions many health professionals have to find out.

I felt my meeting went well with the Psychiatrist as she reminded me that my husband and I are a very impressive power couple and the love that we have for one another is very rare. I had to tell her how impressed I was at how much my love took care of me. I even lost it and cried as I was telling her this and she then asked me why I was crying and I told her; because I love him so much and it deeply touches me; everything that he does for me; it's just so sweet!) I even told her how much he makes me laugh and how so many terrible things that I am facing are not so terrible as long as I am experiencing them with him.

I think it must have been impressive to her that our love for one another has gotten us this far. She did tell me that my feelings are very normal and it was relieving to at least know that me crying and worrying is not me loosing my mind; it's just me being human. Of course I had Blue because of Blue Belle and her joyfulness; I don't have to take any Anti-Depressants. Its just not necessary. She makes me, my husband, and all those around me smile and that's undepressing enough!)

Now I still have problems sleeping at night and knowing that I don't have an addictive personality helped her in prescribing me 2 drugs that I can switch from in case one doesn't work as well. I did so in the past couple of years when Ativan didn't work, I would switch to the other drug. It's between Ativan and Klonopin. The way that these two drugs work for me in giving me a choice of the two to take when needed: The Ativan is less strong but is activated much faster in the case of severe anal spasms or an anxiety attack. For Klonopan, if I am feeling stressed or that the spasms will eventually come around it takes longer to take effect, but it the effect of the drug is longer lasting.

My system works better with changes; for example, one night that I am feeling restless, I might take an Ativan, another night, perhaps a joint combined with some Yoga, the next night a Benadryl, then perhaps nothing at all, then it might be a Klonopan, then nothing at all again. I have to switch things up or my body will become immune to it. That's exactly how it works. If I don't switch it up and just use any of these 2 days in a row for sleeping; then there is a good chance that I might be rolling around all night. These two drugs are normally extremely addictive for most; but I plan to only use when needed as I do all of my medications. My last prescriptions lasted a whole year; only taking what I needed. At times I do suffer from insomnia and it's mostly caused by worrying too much about the future, scared of dying, finances, job, family, friends; mostly stress. I will lie awake all night long tossing and turning, running to the bathroom, or to go downstairs to watch TV if it's bad enough.

HEALTH UPDATE:

My system seems to be improving some and I am able to tolerate eating other types of foods. I think I have been getting used to some of these symptoms. The worst of the symptoms are the anal spasms by far. Those suck ass quite literally for me; no pun intended. I have been dealing with them as muscle spasms and even taking an Ativan which basically calms my nerves and in a sense those anal spasms are also caused by nerves. They are so incredibly unpleasant and feel as if I have dry heaves in my ass! Am I an asshole? One time my oncologist prescribed Ativan to me and on the bottle itself; it said "take as needed for Anal Spasms". That would be an embarrassing bottle to have to explain but it doesn't bother me at all!)

I sometimes ask God and I know that sounds bad; but why the hell do I have to have these Ass Hole problems? What the hell? Does God think that I'm some sort of an Asshole? Why can't real assholes have these problems? This world would be such a great place to be if all the wrongs of the world were corrected in that manner. When someone is an asshole; they could just go through what I go through in a day or how ever long it takes for them to realize that they are being assholes in the first place! YES, let the real assholes of the world have these horrible painful anal spasms and the hemorrhoids, the diarrhea, burning asshole; the whole 9 yards deal!) That would be the coolest; I wouldn't be an Asshole to anyone if I had to go through all of that! Too bad I do anyway; just to relieve that pain with drugs for now!)

OK well the Ativan takes about 15 - 20 minutes to take effect but once it does; I am more comfortable and not really feeling any pains for the time being. Sometimes I will smoke a joint to get rid of the horrible heaviness that I will feel in my tummy which is also quite painful. It literally feels as if my intestines are about to head right to my asshole. That's pain worthy of getting rid of!) It's what makes its way down to my asshole. OH the things I am having to do to gain weight and to get rid of pain. One thing after another, but at least I am at home healing and there's no better place than being at home right now!)

I also have my honey at home and he has been threatening a romantic weekday (when the hotels are cheap) getaway. We really do need a little mini vacation after all this crap (no pun intended). I just need to be able to survive a few hours in the car with out having the urge to have to pull over. I can handle those 5 minute drives; those are rockin right now. I survived a whole 45 minutes of going out for Sushi last night! Oh that was good! Didn't eat much raw fish (just some tuna and salmon), some miso, and a few CA rolls.

One of my honey's responsibilities is to check my Nephostomy tube dressing each day. He takes these jobs very seriously and inspects closely. Yesterday he found the dressing was coming off and underneath it was wet. He was very concerned and was not liking that I was taking baths and quite possibly from accidently getting water up there. Not sure how as the bath was quite shallow each time. Just needed some butthole releif. With that, he drove to a medical supply store to get me my very own sitz bath butthole contraption for my burning butthole! Oh how I love him so!)

My back was so incredibly itchy and I really tried my best to resist when I wanted to scratch and oh how I wanted to scratch to my heart's content! It was hard to resist and of course it got wet and sticky. Hopefully it wasn't urine seeping out (ick). Do I piss people off too to have these pee pee problems too? What the hell? Just kidding.

The nurse came over and changed my dressing and even got me a new tube hangy thing (forgot what's it called) but it helps hold the tube in place in case I get it caught on something it doesn't completely rip the whole tube out of my kidney. She also took my vitals and will be over next week to change that dressing again. Hopefully I can get rid of this thing in just couple more weeks. Plan to stay possitive that this isn't going to be a permanent thing. Thanks to all who have been praying for me and sending me all kinds of healing thoughts. I am getting stronger each day and proudly weighed in this morning at 116lbs!)

The Anxiety of a 1st day back at work....

Monday night I took one of my chemo pills and tried to go to sleep at around 10pm so that I could get a good night's rest prior to my first day back to work. I knew that I was having some insomnia so I took an Ativan to calm my anxiety and to get some sleep. I still rolled around in bed all night long and even managed to keep my husband awake all night as well. I kept waking up to go to the bathroom at least 20-30 times throughout the night. I think I must have seen each hour of the night flash before me as I awoke each time looking right at the alarm clock and the countdown before it was to go off at 5:45am.

Finally it was that time, so I awoke very sleepily and got into the shower. After I took my shower, it was just like any of other day of getting ready for work, picking out what to wear, brushing teeth, make-up, walking Blue Belle, and then off to work, or so I thought. I did notice that I was feeling very nauseated and I could also feel a slight bowel obstruction. It was painful, but I tried my best just to ignore the pain and continue to my carpool meet-up spot. I kept thinking the pain will subside once I get to work. I honestly did not feel like going to work being as tired as I was and in this much pain; it actually felt miserable to consider going to work like this.

It has been 3 and half months since I had been to work and knowing that I would be greeted and asked about my state of being (which I sure wasn't feeling very good). I sat in my car waiting and feeling intense anxiety over the pain and nausea I was feeling; how good it would feel to be in my bed right now.

Finally my carpool buddies arrived and were ready to go. I greeted one of them with a hug as she could tell I was not looking so good. I struggled not to cry and feeling very frustrated with my state of being. I got into the front seat and sat for a few moments as both asked me how I was feeling. I felt the need to be completely honest and to not push myself too much. I told both of them that I'm not feeling as good as I had hoped. They drove over to my car and I apologized as they told, "stay home today and just get some rest". They both wished me well as I went home to call my boss and to email HR.

I then climbed into bed and layed there relieved that I wouldn't be at work in so much pain. My husband had just left for work so I decided I needed to get some things to make me feel much better so that I could at least go to work tomorrow. I walked over to the Drug Store (I live in such a convenient location!) to get a whole box of enemas, sleeping pills and 2 Cards for my husband (an anniversary for tomorrow, and a birthday card). Since I had a mild abdominal blockage it was time to do the Rotor-ooter treatment part of getting better.

When I got home from the drug store, I checked my email and noticed an email from HR that seemed rather cold given my situation, but it was understandable. I needed to get a note from my doctor as to why I am not returning back to work today. I called my doctor and left a message for him that I am experiencing an abdominal blockage today and would need a note to return to work tomorrow. I kept thinking, I should have just ignored the pain and gone to work. I kept worrying about work and hoping that I don't have to go through this each time I am sick (have to produce a doctor's note). I could easily with my situation as my doctors do stand strong behind me each time I would end up sick and unable to go to work.

Getting a doctor's note can be a challenge when having to go to the hospital to actually get the note; there's dealing with the horrible traffic, then there's finding a parking spot (it can take as much as 20-25 minutes to find a spot), then you have to walk into a crowded business office, pick a number first, then go to the bathroom if needed (it just takes about 30-45 minutes of waiting). The cool thing is, there usually is a note on file after I have made my phone calls and if not, I just have to go up to the fourth floor and wait in line to see my doctor.

Anyway, back to being home and taking good care of myself for the following day of going back to work. I was able to take my sleeping pill and get some good rest. I woke up around 1pm, did another enema, took a nice hot bath, and then tried to leave another message for my doctor about the note.

My husband came home early (2pm) and napped with me some as he struggled to get the rest he needed so that he could go see AC/DC with some of his friends later on in the evening. He wanted me to go initially but I needed to rest and focus on getting back to work. I knew how much he loved this band and told him he should go. He would be taking tomorrow (out 6 year wedding anniversary off). He left around 4:30ish to go meet his friends and I had a nice peaceful evening with Blue Belle.

Wow a whole week, just like that!

One thing I have forgotten to mention in this blog is that I suffer from severe insomnia. Maybe its due to chemo brain, but it is something that frustrates me. I have for several years since my diagnosis. I don't think about it much through out the day because I am too busy enjoying all of my waking hours. Imagine that?

I usually don't sleep well with out any medication or at least lately I haven't. The medication I normally take is Benadryl around 4 days a week (starting about 2 months ago), sometimes skipping days and around once a week or twice, I will sometimes but rarely take an Ativan (Lorazepam). I had heard from other patients (ones who have since passed on), that they took around 2 per night. I was thinking I was taking too many until I had spoken with these other patients. With this drug being a narcotic, I really can't take any more than 2 per week. I fear constipation in my case and that is real.

I am a bit frightened of all the chemicals that I am prescribed so I try my best not to take too many and to keep it as natural as possible.

Sometime Cannabis works for my insomnia but not all the time. This could be due to the type that I normally get which is the Indica. Indicas are normally used for pain and the Sativas are more for relaxing and or sleep.

My doctor prescribed the Ativan drug to me for my insomnia and for unpleasant anal spasms. Yes, I have no shame in talking the truth about this disease. I just hope my talk of my experiences will make your life experiences much easier to deal with. I have talked with others who have it far worse than I do believe it or not. There is always someone out there in this world who may have it much worse.

Now if I don't take anything for sleep, I often just roll around for all hours of the night, going to the bathroom every half hour or so and it can be completely miserable. I really want my body to get adequate rest without any (chemical) help but it just doesn't occur naturally as often as I wish it could be.

When I was working, this became a big problem because sometimes I wouldn't get to bed until after 1am then awake at 5:30am. Being tired at work was often hard but I am pretty tough and I dealt with it. I hope to get a good sleep pattern by the time I get to back to work on December 1st. I will try my best! That's all you can do in life is do your best; right?

Today, I went to have a romantic lunch with my husband at the Olive Garden. Right before I picked him up and he was outside with a co-worker when all of a sudden a huge 6 point buck walked up to them and stood there for about 15 minutes just looking right at my husband. We both thought of that baby that died on Saturday when we had gone on our motorcycle ride. It was site to see I am sure! Hearing this story on our way to lunch made me love him all the more! I guess I just love him more and more each day!

At lunch I ate some salad which I hadn't had the pleasure of having for at least 2 months. My doctor feels I can't digest salad because its "too much roughage" and my system will have problems. It was worth it and we even splurged and had some Pumpkin Cheesecake!

Well, currently I am suffering from yet another abdominal blockage. The sounds from intestines have been increasing steadily with each passing hour. It must be tiring to read about all of these blockages! I must seemingly get them all the time! It seems one after another will happen and it's all due to trying to digest food. Well, I should know they are tiring to have.
I know, I need to eat better things but sometimes that excuse "You only live onces" happens.

So what else has happened this week? Anything interesting? Well yes and no.

On Monday, October 20th, I had taken Miss Blue Belle for her walk and had gone to get coffee and donuts for my husband. I had my hands full when walking in the door and Tonto was crying and inquiring as to why he didn't get to do, so with that prior to me slamming the door shut; he takes it upon himself to rush out the door as I am slamming it. I realize immediately that "OMG! I just slammed the door on Tonto!". He didn't seem bothered by it at all at the moment.

The rest of the day he just hid and I didn't see or hear from him until after 3pm. I was upstairs and saw him sitting on the edge of the closet. He didn't look very comfortable and when I walked over to pet him, he cried and showed me his swollen foot. I picked him up to see if he could walk on it. He cried and limped forward. He really seemed to be hurting, so I called the vet. The vet had no available appointments and it really seemed like Tonto was in serious pain. He was crying and wanting me to do something. The vet told me that emergency charges would be upwards of $200 or more and having to watch our money, I decided to try to take care of him myself.

I was scared that his bone was broken because he couldn't walk on his foot at all. I cried blaming myself for hurting this poor cat, so I took him into the bathroom and tried in the only way I knew how to get of his pain. I got my cat stoned with the vaporizer. I also got some frozen pees and massaged him and placed the peas on his swollen foot. All that effort to get him better seems to have worked.

He just fell asleep and slept the rest of the day and then the next morning, he was walking on his bad foot until I ignored him after he had already been fed. He just wanted more food and of course he is on a diet; I refused, so he started to limp again. I imagine he was just milking it for all it was worth. He knew I felt bad for slamming his foot in the door.

The swelling in his foot went down dramatically. and I knew I wouldn't have to bring him to the vet. It was obvious that his bone was not broken. I was thankful. He is much better and doesn't limp at all anymore and its almost as if his foot was never hurt. He doesn't rush to escape out the door anymore!

I also went to a local bicycle shop on Wednesday to go look at Beach Cruisers! I road a few bikes and finally settled on one. It was so comfy to ride and road just perfect; not bending over and falling off the bike because of it being too big and bulky or confusing gears. I told my husband that I went looking and found the bike I wanted.

He was excited that he finally found something sweet to get me. He was so excited as he looked all over the internet finding pretty ones and then calling me to look up websites with all kinds of pretty bikes. I didn't have the heart to tell him that I had the store (Hyland Family Bikes) hold that one because he was just so excited about the opportunity to pick out a bike for me. This place has been around since 1963 and it is a family owned business. I have purchased a bike here before for a good friend of mine and have sworn to come back and get one for me. This should be interesting to see how it plays out. I did call my accountant and it is something we can write off as a business expense being that I do wish to own a green business and would utilize the bike for dropping off orders.