Well I am looking on the bright side of things besides the puking and pooping at the same time has started up again and this time I have been hooking up the tube (Gastric puke bag= it's one of those horrible bags that usually has green icky stuff only mine has been of many colors); just the other day we hooked it up with the nurse and I got to puke up my Naturade Weight Gain 1500 calorie Decaf Coffee (I mixed in 4 whole scoops )with Pumpkin spice and it's not working out so great. Normally this is a sufficient breakfast for me (easy to make and holds me over for hours), but right after I ate; my tummy started hurting like crazy so we had to hook up the Gastric Tube Bag. Nothing was coming out; when we would flush my tummy until we realized; It could be that the tube is blocked again and we need a replacement; so we replaced the tube and it was like someone had let the levees down! Coffee and everything just came out! It was gross but we could see everything!
I would hate to think that I am ready for another hospital visit and we would have to add another new thingy or baggy for my survival. Lately I have been loosing my ability to hold my poo; at least I am trying to strengthen those muscles sometimes and hopefully it's working; but I have pooed in my pants in my home more times than I can count; thank god I wasn't out somewhere but I can honestly say that so far so good I have angels out there working in my favor. I still get to have fun and not have to worry about too much; but there is always that chance that it will happen in public.
Here is a little romp I got to have on Saturday with one of my neighbors. We got to ride for a little while and I was sad that we had to cut our ride short; for the first time ever it wasn't because my body wasn't working so good.
Right now we are fighting doctors and home nurses about going on hospice care to prepare me to die. They don't want me to be on the IV fluids or even TPN for much longer; just prepare me for another month or so? This is so morbid; but as long as my heart is beating and I have this strong desire in my heart to live; I will live. My husband stands by me in my decision to live. I'm not dead yet; so why treat me as if I am dying; I'm living? I would like to be ready to go back to work by March and I will fight for as long as I can to get stronger and stronger until I make that goal. So what those two little surgeries delayed my start date on January 15th; OK it's just delayed for a little while longer. Patience is key here and I really wish it wasn't such a hurry for these doctors to hurry up and kill me. That's exactly what it feels like right now and it's the same for my husband. It seems we are being pressured more and more to go onto hospice care and I just don't want to! I don't want to die just yet; I want what it takes and everything it takes to save my life right now; we are being pressured by the social workers, the doctors, and home health nurses that I need hospice care. I admit; I do look a little like a skeleton but not that bad; I am gaining some weight and I'm maintaining.
I am determined now more than ever to prove those doctors and those nurses wrong. When I get out and I ride my beach cruiser; I tell myself inside with ever push and pedal that cancer cells are dying; with every yoga stretch; they are dying; with every little piece of Hedge Apple that I eat; they are dying and I can even see this tumor on my back getting smaller; it could be wishful thinking but what ever works; I'm hoping that it's all mind over matter. I don't care about the pain now; it is bad when it gets bad and yeah I hate that I have to survive on these pain killers but what ever can keep me alive; I'm all for it. I wonder how many other patients fighting terminal illnesses such as mine are so rushed to death by our current medical system? Compassion instead of profit? Can't lives be worth more than that? I actually feel that my body has been mangled and poisoned for profit so that maybe I will live a few years to make enough profit and then thrown away? Maybe I'm not worth saving for them but I feel that I am; I'm far too young and I'm a good person. There are not that many people out there like me and it would good if there were more. It seems like so too many good hearted people who are rushed to die with Cancer; they are cut up and poisoned. I really don't buy it; you can just poison cancer; you have to make the body strong enough so that it can it can fight it. I really think that Suzanne Summers is right on this one. It worked for her and thousands of others just like her. I actually met a woman at the dog park just a few years ago who was diagnosed with the same kind of cancer (Ovarian Cancer Stage IIIc) I have back in in 1983 and this woman refused surgery and chemo and is still alive today. She actually tests her blood sugars and eats a macrobiotic diet. She is also scared to death of doctors and rightfully so; I too am scared of them. I feel that I have to trust them and I hope that they have some sort of compassion for me.
I would like more compassion for patients and real research on what really works to treat cancer to be another thing to be changed in the current health care reform. Too much is focused on profit and not enough on quality care. Don't rush patients to death? Instead of rushing these patients into hospice; why not reward doctors for how many lives they actually save rather than how many drugs and expensive surgeries they can pull on a patient? OK I might sound like I am talking through my ass to some but I have been through a whole hell of a lot in this cancer journey and I'm still not ready to throw in the towel yet because I feel that I have so much to offer the world. Next week I hope to take my dad with me to the Palo Alto VA hospital to visit with patients with my dog. My mom and my aunt should be here on Thursday; yippeee! I haven't seen my Aunt in ages (20 years). They are going about visiting me in the most peculiar way; I hope it works and they can make it. I'm so excited to see my mom! I can't wait to see both of them!
Anyway, I met this wonderful young man through my blog; he emailed me on Facebook and we decided to meet up at the Starbucks right across the street. He had just lost his beautiful wife on Christmas day and he was blown away at how beautiful her life was and then how it ended. Both of her parents were there when she made her last dying breath just as they were there when she came into this world. The service was beautiful from what I understand and I sure wish I would have gotten his message sooner so that I could have gone to that service. My husband actually got jealous that I had gone over to Starbucks to go meet a stranger but in reality he gets to go to his neighborhood bar to meet strangers all the time and I couldn't for the life of me get him to wake up that morning to go with me. I know it would do him some good to talk with this young man. I can't get over how strong caregivers of loved ones are; both him and my honey have this love about them for their spouse like no other. Just like my honey says he doesn't want anyone else after me; this young man felt the same way. I just want my honey to be happy and I'm sure this young man's love of life would want the same. I know if I were put in the same situation; I don't think I could live with out mine; I would probably more than like be dead within a year with out mine. I've faught this long all for love and that's the truth of it all. I want to hang on for as long as it takes to beat this disease and so that I can have more fun with my honey! Peace and Love to All!