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

Chemo once a week and side effects...

I hope these cute photos of Tonto and Blue Belle cheer up many or at least make you laugh.

Well I had my chemo on Monday (it was scheduled at 9am, but I didn't get it until after 10:30am, I was done by 11:15am). For the next 3 days I have side effects (I'm noticing this each week); actually 4 days if you include my face breaking out like crazy and then 2 to 3 days I finally start to feel normal for the week. The day of chemo I'm OK until several hours later when I pass out. The following day; I'm useless for most of the day; I usually wake up with extremely bad nausea and no desire what so ever to eat or drink; but the problem is; I have to. I don't have a choice; if I don't drink anything; the chemo can seriously damage my kidneys so I force myself to use the bong and inhale the THC which in turn makes me drink lots of Gatoraide and Cranberry and water; then the next day; like today; I shit all day long (not only do I feel like shit but I shit all day long and can not be farther than 10 ft from a working toilet) and it's diarrhea (oh the unpleasantries of chemo) that really burns my ass; it's really NO fun at all; but those other great days that fall after those inconveniences are well worth it. Hell just waking up each day next to the man that I love is well worth every bit of suffering with this disease. He makes everything I suffer and go through so worth it! I could go through many years of this with him and with him only!)

I am so blessed to have him in my life and taking care of me that I will never ever take any of what he does for me for granted. Yes, we have problems like most couples but we cherish each day that we do have together like nothing else. I'm also happy for others who also get to experience this type of love and have met many other cancer patients who also have their other half who is with them for better and for worse, richer and for poorer, and in sickness and in health; no matter what they still tough it out and it's not just toughing it out; it's part of life and living. Most people go through hardships no matter what; ours just seems more prevalent lately (we have been having lots of hardships this summer) but hopefully things will get much better. I hope one day that I will be able to stomach and digest real food just like everyone else. I also hope that we can take a small vacation together just to get away for a little while; maybe for a weekend; but the feeding apparatus will have to be gone before we can do that. Don't we all wish for more in life?)

While I was getting my chemo, I saw the cutest couple in front of me where one of them was getting chemo and the other was just there for support. I thought they were cute because they were so appreciative of one another and the care giver was incredibly accommodating to the other. They were two older gentleman (yes I live in CA somewhat close to SF), but yes they were gay and were totally sweet to me. Both had very warm genuine smiles when I looked over at them; we didn't talk; I just watched them; I still had my TV and was able to watch Animal Cops SF and Phoenix; but I have to say it was more entertaining to watch them. I could just see the love in the room as they seemed to have a grand time no matter what. I didn't have anyone else near me as I got my chemo. I never ask my husband to sit there and wait with me while I get my chemo. He used to in the beginning but most of the time I would be asleep from the Benadryl or whatever else they gave me that konked me out. Since then, I have always felt that chemo isn't that exciting enough to sit around but then seeing those two together made me think otherwise. They really were making the most of it.

Anyway, back to this couple, they were both Asian, the one getting chemo was bald and very thin and very tall; his partner was somewhat short and stocky but he was with his partner every step of the way; making sure that he was comfortable; he opened up the case for the computer, brought the computer over where his partner could see it perfectly, spent the time to hook it up and set it up and then the two watched a hilarious movie together; I could tell by the two of them laughing like crazy. They seemed to enjoy every bit of time they had together as they smiled warmly at each other and kissed a few times. My little drip was only an hour and I was there nearly 2 and half hours; they were there way before I was (I knew this because it does take forever for someone to come over and hook up your chemo or get the IV started); he didn't have a port because I could see that he was getting his IV right when I sat down. He got his chemo before I did but his drip was much longer than mine; so I assume his cancer may just be more aggressive or fast growing than mine is. My cancer is slow growing but very persistent and it seems to grow all the time; I feel I may have more time than most who battle however my cancer tends to be more resistant to treatment but we will see. We have about a 10% chance that the chemo will work. I'm praying this treatment is working and not sure if it's just psychological but my husband and I are noticing that my tumor might be shrinking.

Yes, there are still others in this world who are far worse off than I am and maybe can't even eat at all or maybe don't have the time that I have. I've had too many of those weeks where I can't even eat ice chips and now I am so thankful that I can at least eat ice cream, small amounts of very cooked pasta, hate the baby food, soup, some breads, not liking the yogurt or the smoothies all that much. Yes, that's my diet; I'm hoping to include sushi next week and each time I do try to add something new; it's usually hit or miss. I suffer sometimes just for a few days as it tries to make it through my difficult system and sometimes it works and I don't have that many problems; but I still get pain most of the time in my stomach when I am digesting and it gets old.

We are planning to discontinue the intravenous feeding once I get up to 125 and can maintain the weight at least for a week. It really is a challenge now planning around my feedings since I am taken off the drip at lunchtime (when it's convenient) and I get only 6 hours of freedom; that's it! . I can't do any of this myself since flushing requires two hands. The real challenge will be maintaining the weight after I get off the intravenous feeding. I don't have much energy to cook but will just have work on it and do my best. My honey is willing to learn to cook for me; now that is love!)

I'm actually saddened by the loss of Ted Kennedy and I knew it would come soon. I loved him dearly as a politician and he had so much fighting spirit. I want to fight my cancer as he worked hard as a Senator for our country in getting so many great laws passed that help the common people; including Civil Rights. I wish his family the best and I hope the Kennedy family continues to do good things for our country.

I did finally get all the paperwork needed for Blue Belle to be my legal service dog. Check out her new sporty vest; she loves it and feels pretty wearing it!) I am so thankful for laws that protect the disabled. Pets really are therapeutic and can serve a vital purpose for many. I can't get over the smiles that I get when I walk Blue Belle into any public building. She really is the Peace Dog and my neighbor bought me a Tied Died Shirt that says Peace Dog. I wish I could wear it every day now that it is my favorite shirt ever. It used to be my T-shirt that says "Music is my Religion".

Remember next month (September) is "National Ovarian Cancer Awareness Month". I will be writing a few posts next month to commemorate this special month and hopefully we can raise some funds for Research. L’Oréal Paris has asked that I be a Hope Ambassador. I feel very honored to do this; so look out for these upcoming posts next month. Peace and Love to all!

A Nightmare Return to the Hospital..

Well I spent all night long in the ER dealing with trying to get medicated in time for the pain waves to start and then finally at 6:30am I am was finally taken to my room on the 4th floor; an area where nurses are assigned patients at a rate of 1 nurse per 5 patients where as before it was only 2-3 patients on the 2nd floor. I had the slowest nurse on the planet and not at all the brightest; she meant well but she did not at all understand or comprehend that I was indeed suffering in the highest levels of pain. I guess she just thought that I was just some psychotic drug addict and was screaming because I needed drugs.

I remember screaming and crying in my room screaming for help and no call button to be seen. I was very lucky to have a roommate who was able to call a nurse to help me get a puke bucket and nothing else. All of a sudden I puked out a bunch of green shit and it just kept coming in waves; my insides were feeling as if they were being torn and ripped up; I almost felt as if I had ripped a staple; puke was even coming out of my nose and I could not breath; more puke was coming as as the puke was coming out of my mouth I yelled "Help! Help! Please help me!" I was so scared and I thought I was dying from such severe pain. My stomach was cramping like no other and tears were just streaming down my eyes. It had already been over half hour with out anything for pain.

My nurse finally came in with very disheveled hair kind of brushed all over the place; she looked like an older Chinese woman; she appeared in shock after I showed her my stomach which was swelled up and had multiple staples going down my stomach and I asked if she could please examine them in case some had ripped out.

I think it freaked her out and she hurried out of the room; she didn't want to see me any more; I guess she wanted to just let me die in peace. I was hoping and praying that she was going to call the doctor on call to get me something for pain but nothing at all from this nurse. She tried her best to forget that I even existed even as I yelled and screamed in pain. It was like it must have been like normal times on the 4th floor of Kaiser Hospital, Santa Clara; that one loud patient that is often ignored; no matter how loud their pleas for help must be.

I finally found the call button and kept calling her for pain meds and each time she came in; she told me that the doctor had in the computer that I was to be on a PCN and we had to wait for the pharmacy to get that unit ready. Nothing could be done; she didn't have the ability to call the doctor for more meds; she was too busy to do that. She acted just like it would be like 2 minutes more of waiting each time; "it's on the way!" she would tell me. She didn't tell me that it would be another 3 hours of waiting and in the mean time I begged her to just get me some form a pain shot; anything to stop this pain. It was a 10 and I was suffering needlessly. The whole time I was suffering in this pain; I was trying so hard to breath and to stay alive because it really seemed that death was right around the corner. I wanted to do everything I could to survive this horrible pain. I called the operator, then patient relations to see if I still had health insurance. I was so desparate. Nothing at all could be done to help me because I was just a number to all of them; I even tried to call OBGYN Oncology just prior to 9am when the pain had gotten even worse. It was about a 12 and I could barely talk on the phone; I pleaded with the nurse on the phone to please send me a doctor that could help me.

As far as I was concerned; I was going through some cruel and unusual punishment for a patient to have to endure. I hope to GOD that Obama's Healthcare bill passes so that I can have more options for treatments and that things change from the way that they are. I can see as a patient areas needed for change; where patients are treated as Medical Record Numbers and not as actual breathing life. I really do hope it does pass for my life's sake and I'm sure countless others. I am not a huge fan of the misinformation campaign that is going on from these Health Insurance Companies that are fighting tooth and nail and using their all mighty power of the dollar to misinform the public about this Health Plan. This is a very good plan and great start needed for America.

I have this small feeling in the bottom of my heart that this HMO set up might just be waiting for me to kick the bucket and that sounds bad but it could just be what is happening to me right now and that really is a reality. I'm a burden on the system and I know this because of my pre-existing condition and chronic condition. I pray that my life is worth saving. What they don't know if what a fighter I am and I will fight tooth and nail to stay alive; I'm young and I will do everything in my power to survive this; I don't care how much pain I have to endure; I have so much to live for and so much to give to this huge world.

Well back to getting to my room; my nurse was treating me just like I was inside that computer and not just sitting here crying and screaming in pain. My level far exceeded a 10 and to make me suffer for 3 and half hours in pain while she was waiting for a box; I pleaded and begged her or anyone to just PLEASE give me a shot of morphine or something just to get rid of the pain right now rather than to have me wait for them to set up the box and of course the Pharmacy was taking a long time to get the box. It was hours before that box would even arrive and no one was willing to help me simply because in the computer the doctor had order a PCN for me to manage the pain. Well the trouble was no PCN and it wouldn't be one for many hours to come. I had suffer all those hours.

My eyes were literally rolling back in my head at this point and my poor room mate (same woman from downstairs in ER) was completely worried about me. She was shocked that nothing was being done for my pain. I kept calling the nurse and each time she would reply; the pain medication is on the way. I even got myself out of bed and tried to collapse in the hallway just to get some attention and this didn't even phase anyone on this floor. One nurse came over and helped me back to my bed as I pleaded with her to please call a doctor so that I could please get some relief from this extreme pain.

I was suffering in what I felt was cruel and unusual punishment to be going through that kind of pain and nothing to be done about it at all for several hours. I was amazed; not a care in the world about my pain. the box finally arrived just after 10am it took about 1/2 an hour for those nurses to figure out how to set it up in the mean time I was crying and going into convulsions from the extreme pain I was in. I was ready to pass out at this moment; tears were streaming down my face as it felt as if my intestines were being blown up.

Finally the box was hooked up and about 15 minutes later I was able to get my pain level under control; I was so happy. The forgetful nurse had to be reminded at least 4 times for everything that I needed.

My doctor finally made it to my room after 11 am when I had to go to the restroom pushing 3 different IV poles which was very hard in my condition. I made it though and one of the nurses was helping me to try to get rid of items not needed and consolidate everything onto one pole instead of 3.

My doctor informed me that according to the CAT scan I had taken earlier in the morning while in ER; my intestines were indeed very inflamed and he felt that the pain meds were simply not being absorbed into my system and therefore that is the reason that the pain was just out of control. Our goal for this stay; I have to be able to eat, shit, fart, and have the pain under control which should only take a few more days of being in here. I didn't get to tell him of the hell I had gone through this morning and I had forgotten to tell him to call my husband who just happened to be very ticked about me going home so early while I was in so much pain. It was as if they were in a hurry to get rid of me. He decided that he would put me on a pain patch and some liquid morphine to better control the pain. I would also be taking a suppository later on to hopefully wake-up my bowels. He told me that he would also put Ativan on my list of drugs to be able to have access to or to have a constant order for as needed.

Well I took the the Suppository about an hour later and then of course the muscle spasms began at around 1:45pm. I told my forgettful nurse Helen that I needed to get an Ativan to control the spasms and she insisted that I push the button on my PCA pump. That was not the case at all. I was having muscle spasms and it was just like talking to a brick wall in order to get the Ativan. She ignored the order that was already in the computer and insisted on calling my doctor first rather than pay attention to what was already in the computer. She finally got in touch with my doctor at around 4pm after I had been suffering in horrible horrible pain. To be quite honest; my poor butthole has been sliced, diced, staples, sewed and is full of scar tissue and the muscle spasms get to be so incredibly painful that I can barely stand it. I kept having to run to the bathroom and sometimes it felt as if I were ripping apart stitches inside me as the uncontrollable spasms continues. Here we go again, with this slow ass nurse.

Finally at 4:30pm the pharmacy had my Ativan ready after over 2 hours of agony. I kept pleading with her all those hours to please follow the order that was already in the computer but since I was just a dumb patient and a crazy drug addict; I didn't know anything. Hell I'm just a medical record number. I was just acting like I was in pain. Un-freaking believable! I couldn't believe this woman; just allowing me to suffer in pain like this needlessly. I tried hard to call other doctors while she was slow about calling mine. I needed help and I didn't get it when I needed it. It was absolutely rediculous to have to happen again.

My poor roommate had to put up with quite a bit from me and could barely get any sleep from my screaming and crying and I really felt bad about that. I continued to appologize to her and she totally understood my side of the story and was shocked herself that I was allowed to suffer in such extreme pain for so long. It was ridiculous.

It was around lunchtime when my sweet neighbor Sharon came by to visit me and make me feel much better. I was also happy to be talking with a very sweet roommate who happened to be very compassionate and understanding. While we both had very different diseases; we both had to be on chemo like drugs to keep us alive. Sharon had told me that her son had seen the ambulance taking me last night and was worried all night about me. I was doing much better and the pain was finally under control. She first asked me if there was anything she could get me and I did tell her that I didn't have good TP and she promised that she would give me the best pedicure ever tomorrow. I can't wait! What wonderful friends to be thankful for and I'm so glad I faught so hard to live through my ordeal. It really did almost seem as if I were going to die and faught hard the whole time. I have to live in the moment and be thankful for right now and I am. I'm very thankful for all the love I have in my life right now from so many.

Well I paid Ann back somewhat for my troubles; well Jimmy did. He brought in Miss Blue Belle to cheer us all up. Blue Belle was the perfect therapy for such a rough, rough day. I petted her and loved on and so did Ann my roommate. She just lost herself in Blue Belle's soft fur and Miss Blue Belle gave her infamous smile and lots of Blue Belle kisses. Sorry I don't have any photos of this union; didn't have my camera, phone or computer all day long and at that point they were still in the truck. I was so happy my honey remembered to bring what he did to make me feel more comforable during my stay here. How lucky I am to have him in my life. I'm thankful every moment to have him. He was very mad the entire time I was in so much pain. I didn't call him much throughout the ordeal so that I didn't stress him while he was at work. It was already stressful enough, but thank you GOD for getting me through all of that! I was not thankful to have to endure so much pain and I have to admit I did get mad at GOD quite a bit for making me suffer for long. I just didn't understand why it was happening, but it's over now! I made it!)

My husband couldn't stay too long but later on called me back on Skype and we continued to talk about the day and how lucky I am to be alive, how much life is worth fighting for and of course professing our love for one another. We must tell each other that we love each other at least 10 times per day. I can't help it; he is the love of my life and I so happy and very, very grateful to have found him.