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!
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!)
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!)
1 comment:
CJ you are such a fighter! It is very inspirational to hear your story. When you were talking about your tumor it reminded me of my hubby's uncle who named his tumor "W". This was during the Bush administration and he couldn't stand Bush of course. He said each time he got treatments he imagined himself pooping "W" out. LOL He is cancer-free now so I guess it worked :)
- Sarah
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