My Awesome Pain Pump...

This photo more than says it all for my tiny petite size.  Only weighing in at 101.5.  Whoo hoo!  I'm pretty damned bony and I can't do anything about it!  Can't eat a damned thing!(  It totally sucks! I'm mortified to be this small and while some girls are starving themselves to death to be this small and much smaller baffles me to no end? I wished so much that I could just have their ability to eat and to gain about 50lbs; that would be awesome!   That Hockey puck is my pain pump and it more than shows itself through my bony ass! At least they can find it with out any problems?

  

 Well Tuesday I was able to get my pain pump turned up but I'm still going through the horrible, horrible painful heartburn pain that even results with just drinking water. I've given up on eating anything or sometimes I just eat just about anything but deal with the suffering no matter what.   I have a puke fest at least once or twice a day; sometimes more.  It's when I have to puke so bad that it burns my throat, comes out of my nose and almost drowns me!  That's the kind of puking; I get through it each time but its so annoying that I have to go through this every day no matter what?; if I don't eat or do eat?  Definitely if I do eat anything.   I've skipped eating more days than I can count and sometimes I will break down and make myself some mashed potatoes and gravy.   What pain I have to go through just to have just a little bit of pleasure.  My tummy hurts when I'm hungry and especially if I am full! 

Ok back to my pain pump; it is an amazing medical device and it did make quite a difference just turning it up just that little bit that we did.  I'm still having to take more pain medications but nothing orally.   Don't mind my Skeletor legs here!)  The little palm pilot thing is what the doctor uses to punch in calculations that provide me with a certain amount of pain medication.  Pretty fascinating, huh?  Next month we get to change the formulation and maybe get a different drug added?  We will see!)

The little mouse looking object fits perfectly on my pain pump while it beeps to my pain pump (inside me) to "turn up the medication!".   I would highly suggest this device for other patients who are suffering as I have been.  It makes all the more difference in not having to take medications orally when I suffer as I do.  It's no big deal if you are bony like me; they can definitely find it much better and it literally  takes no time to refill it.   In order to refill it; a needle is inserted into the skin where the device is. 

Ok the surgery to insert it was a bitch but now more  than ever after seeing the big picture and the quality of life it has helped me live; it was worth it.  The pain doctor or neurologist can usually find the right spot with that little mouse contraption; like he's doing here.  I' m supposed to get it refilled early next month and since they turned it up it only brings the refill date up maybe a day or two.  It's very convenient to have your heavy duty medicine dispensed this way.  Hey its made in the greatest country ever!  The good Old USA!

So many of you were concerned about me going on to hospice/palliative care with me not being able to get my feeding tube.  Well hospice has agreed that there is no problem at all with me getting my TPN, my medical supplies and everything else I need to fight this battle.  I'm about getting as much good quality time here as I possibly can and that is my ultimate goal in life right now.   I hope this will be a great experience that I can share with all of you!)  I also would like to touch as many souls as possible through my experiences and hopefully help many to see how wonderful life can be if you make it.  You can either wake up and agree that this is going to be a great day or this is going to be a shitty day!)

The other day my TPN bag exploded and we had to skip a day on my bag and of course I lost a few pounds but I'm getting over it.  I haven't hit the dreaded 100lb mark yet so I'm not going to stress all that much.  Tonto helped clean up some of that mess  (behind the couch)  and what a mess that was.  Good thing it only leaked all over my old rug and floor; had to move the couch to clean up that mess.  My honey and I are such a team we got it up in no time; actually he did most of the work. Since the stuff is so high calorie; we will have to watch his waistline more carefully so that means more walks for Tonto!

I might be going through hell as many might see it but I'm so thankful for everyday I am given with my honey and my loved ones.  I don't care how much I have to suffer or puke! because that has been the way it is lately.  I'm getting used to it; (somewhat?).  Hate it when it's happening and so does my sweet honey!   He is such a man!)

Peace and Love to all of you!)

Here is another beautiful horse who needs a home or some bales of hay bought and paid for!  I have to pay these horses back for helping me get through those horrible, horrible hot flashes, that I used to have back in the day; but then I find out that those pills are made from horse piss!  I was pretty mortified to find that out and how the mares are kept pregnant and not able to move much with contraptions attached to them in order to collect their pee?  What a gorgeous colt BIG MAC is.  He was born on the Animali Farm   on July 17, 2009 and should grow up to be a big boy since his mommy was big. He is a mixture of 1/2 Thoroughbred with a mix of Percheron, Shire, Appaloosa, and Paint.     His Adoption fee is $1800.  Please contact Jennifer Johns or Cheryl Forbes if interested: animali@aol.com (805) 938-0174

Painful side effects after stint replacement surgery...

Well I did decide to take all of you on another one of many bike rides around my neighborhood; although I was in pain when I got on the bike; the bike ride I have to admit did make me feel much better although a nice soak in a hot tub would feel amazing if I could just do so!)

I noticed the next day when I awoke that my legs were so incredibly sore and I could barely get out of bed.  I struggled through out the day doing my usual chores like laundry, making meals for my honey, and house hold cleaning.  If I needed anything on the floor; it was a hard task of getting down on the floor where I comfortable and then trying to get up; I needed something to bear my weight on.  My honey had to help me off the couch.  I had decided to go on a bike ride thinking that might make my muscles feel a lot better but in reality it did nothing.  Well actually it did for my morale; it make me feel better just getting out.

I did feel good that I was able to get out and enjoy such a gorgeous day.  My honey and I had gone on a date in the morning hours (after noon) to a movie (Easy A).  I give it 3 stars and Rolling Stone had given it 2 and half stars; so that's about right.  Emma Stone is funny girl with a great sense of humor.  We hope to see another movie soon (Secretariat) with one of favorite actresses "Diane Lane".  What an amazing actress she is!

I'm still feeling the horrible muscle aches in my legs, arms, back, neck, even throat and tongue?  It's really weird and we may go into the ER this morning but we will see; it's still early yet and I'm still as hard headed as ever about going into the hospital for anything.  I hope that my Pain Pump wasn't touched in anyway  and it's scary to even imagine that morphine and something else? could be pumping out into my system to cause all this pain.

Hopefully things will get much better for me and everyone else suffering from cancer or other major diseases!)  Can't just wish for just me; there are so many others in this world in worse shape than myself.  Peace and Love to all of you!)

Here is the lucky horse of the day.  His name is Bess Nick and he was born in May 2007.  He has been gelded.  Here is more information on him: 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 (he likes to roll around), 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.  If interested in this amazing horse; please contact Jennifer Johns or Cheryl Forbes at animali@aol.com.

UPDATE: As the day is going on; the pain is getting more and more and bearable and I am able to walk up and down the stairs with more ease; still having problems lying down and getting back up.  The pain is not as great as it was and hopefully night time does not present another problem.  I do plan to take my bike out today and hopefully that will help the pain in my legs; perhaps some good old Vitamin D Sunshine will help as well!  We will see...

An All Too Familiar Pain- Abdominal Blockage....

Well finally; here is that beautiful bike I wanna keep on riding!  I'm glad I was able to ride and will continue too as soon as this crap is over with.

It was such a long night last night as I anticipated another CT scan to see how much more my cancer has grown.  Well I was also having some horrible, horrible abdominal pain; OMG did it hurt! Youch! Well I got my ass up and I grabbed my syringy thing (the huge one) from the kitchen and pumped some luke warm water into my tummy and then I hooked the gastric bag to the awkward tube hanging out of the hole in my stomach and drained; it pretty damned nasty if you want my opinion, but works to relieve gastric pressure.  I think the tumor must be pushing on my stomach because Prilosec is like taking sugar pills.  I have no idea why I even take the worthless shit every day; it's doing absolutely nothing.  Well the draining  worked some but I did have to take some dilaudid since the pain was atrocious enough.

My oncologist has made it clear he will never operate on me again (7 + countless minor surgeries on pretty much a dead cause; that's how I see it; how can I be dead when I feel so alive?  Well it's not really like that; he has a genuine love for both my husband and I who he has seen fight this so hard together; I don't know if he has ever seen a love as strong as ours and I still want to keep living   despite the pains that I feel daily.  I want to go back to work; but I don't know if I will ever feel 100%, I might get to 70% if I am lucky.    I am more than likely about  60% with all that is going on with me.

My oncologist just doesn't want to risk my life performing another surgery  on me;  I think he's burnt on opening me up; I'm hard one to operate on because everything has been taken out, scraped of cancer, stapled and sewn; and maybe my intestines are like mush now?  I've been cut open way too many times (my neurologist has been cut open 13 times) but hey I survived the pain pump surgery and that was pretty major; I will argue for another surgery to remove this tumor if possible.   Maybe another oncologist in SF can do so?  We will do what we think is best; the doctors certainly don't know how strong my will to live is.   I would rather have that SOB tumor taken out than zapped with radiation, but we will see.   Radiating the little bitch might be good too?  I'm pretty tough and resilient when it comes to recovering, although that process is pretty tiring.  I so hate being in the hospital for weeks after one of those surgeries (major abdominal surgery).
                                                                  

This stupid tumor that is growing on my left side; seems to be growing at rapid pace and we haven't done any chemo since Nov. so that cancer is free to roam my body at this point.  I'm basically just living with this cancer and enjoying every moment I can with my sweet husband since he is why I keep living.  If you can't beat, then just live with it?  He always encourages me, loves me, compliments me, and most of all takes such wonderful care of me!  I keep hearing nurses say that every  patient and even nurse needs a Jimmy and that certainly is the truth.  I feel that our love story is even better than the movie "the notebook".  I think it kicks the Notebook's ass!  I do love that movie and its so romantic.   I don't know what I would do without him; he is the most amazing man ever to me and I can't bear to even think of being with anyone else.  Sure I have some very, very close male friends, who to me are like family, just brothers and I love them so much! Seany, Norm, the Daves/ David,  Tims, Mike, and so many more;  ohhh and I have lots and lots of women who I love too; I feel so lucky to have so many awesome people in my life that genuinely love me; I just wish I could get out more and do all the things I love to do; I sure missed out on one awesome snowboard season; I hope I'm strong enough for next season!
 

Well I had to put a photo of my sweet little girl about to get her bath (that was taken on Saturday).  I am sad to report that I'm back down to 112 and I can't eat anything because of this abdominal block; it has to work it's way out even if I do get back down to 100lbs.  I just need to stay above 100lbs.  It scares me to get down below even 110, but at least I'm there just yet.  I'm almost afraid to drink water but I can relieve myself of some pressure with my gastric tube (oh how I wished that mine was that small and easy to take care of); the weird thing about this tube is that it's kind of like a belly piercing only it not on my belly button; it's just a gaping hole with a long tube sticking out. It goes directly to my stomach.  I can't seem to find the photo I took when my honey had changed the dressing?; I look pretty chubs (its the tumor on the left and the hockey puck pain pain pump on the right), but believe me I am not at all chubby; only if you count those things; they might add some poundage) he does it better than any nurse.  He also has to hydrate me each and every day with those stupid lactated ringers.   What a wonderful husband to be thankful for each and every day.

Well Monday we had our sweet nurse (we really do love her= she is the best!) stop by as usual. I can sit there and tell her anything and also cry as much as I want; its good for me to be able to do that.  She came by and changed my dressing, checked everything to make sure I was ok and while doing so she told me of how her father just died 2 weeks ago; he was so wonderful to his mom; they had been married over 50 years; every morning he was up early; he made coffee and breakfast for his wife and always brought in the paper; well his wife woke up around 7am and didn't hear him at all stirring; he had even mowed the lawn the day before and they had a very active life; well she goes downstairs and immediately notices that the paper hadn't been brought in; that was strange and then she saw the back of his head and he slept silently in his favorite chair; (I didn't have any photos of him sleeping in his favorite chair so I had to use a photo of Tonto sleeping peacefully in his favorite chair)  it seemed he has passed away in his sleep.

At least he was happy and I worry sometimes about that happening to my honey or myself.  We always tell each other "I love you" and we look each other in the eye and then passionately kiss before we go to bed or even just leaving each other like him going to work or out with his buds.  You just never know what each moment brings; we got her a card and a beautiful orchid because we know how much she misses her dad; it's hard to loose a parent and I'm blessed to still have mine around.  I don't have any grandparents except for my step grandmother who has a personality of her own; from what I hear, she's pretty bitter when she isn't the center of attention.  I hope one day she will realize how lucky she is to have lived so long and all the things others do for her and no thank yous?  It's just expected?  I could never be that way; I appreciate everything that anyone does for me.  I'm still very, very touched by all the love shown to by my co-workers at my job.  I will never forget all of  kindness everyone there has shown me.  I keep all their cards; all the way back from 2002.  If I am feeling sad, I can just pull out the box in my closet and just read those cards and I often feel better; Its just a great reminder.   My favorite gift of all is music; its so good for your soul and if it has some groove to it I can't help but boogie my little ass off!)  anyway, I gotta get ready for my CT scan and will provide some vivid details later.  Peace and Love to all of you!  May you all get along with everyone you come in contact with!)