Growing, Growing, ... Gone??
I know that many of you are waiting for a update and once again its going to be brief. The Doc. has put me on all kinds of new meds. and I am having a hell of a time trying to adapt.
My last appointment with the Doc. was not the way I had scripted it to be. He must not have received the "final cut." Seriously though, he was only able to drain a little over 1 liter this time. Ya, I say pooh to that. He had to schedule an appointment to have the perma-catheter put in. He then told me it was time to be taken off this chemo because it didn't appear to be working. Then I said, I have just now only received one full doses of the stuff, How can you say for sure that it is not working?? He then said, I will order you a CT.Scan this Friday. I think to myself... much better.
Now two days after my "catheter" appointment... still retaining fluids but this time not only in tummy but also in legs, ankles, feet, toes, and other places I thought not possible. This time I think man this is it! Maybe my Doc. knows that my body is saying that enough is enough. So, I call him, let him know whats going on and ask him about that catheter as I could desperately use one about now. He tells me he is sorry but it is going to be at least two weeks. As for the time being I must go to the Doc. in oncology to have my fluids drained... the bad news is that he can only drain my abdomen... as for my other extremities... well he prescribed a water pill. I can only hope this can bring some form of relief. If not, I really don't know what will happen next.
Now I am starting to fade... yeah!! Sleepy time.
Just a few more things and I think I will have brought you up to date with all my drama. I recently fired my Oncologist of three years. Three years to long anyway. Her attitude was becoming really pessimistic, now I know that they need to remain realistic but I felt like she had given up on me. Frankly, I am not ready to quit so I found a new Doc., one who still had some trix up his sleeves. Imagine that, and my last Dr. said that there was "really nothing more that could be done" and "have you thought about ending treatments." I will quit when I am ready, my body will know. My body will know better than some Doc. will. In fact here is something I find remarkable. My last Doc. said I would last 6-8months with out treatment and even more discouraging my new Oncologist said that the average person with my type of DX would last no longer than 4-6months. Keeping that in mind, I have not had a successful treatment since July of 2006. So it has now been 8 months. Granted, I know things could go terribly wrong from this point but it just does not seem that way. I am not bed ridden, I can still eat (to much) go on errands, hell I even planted my first veggie garden this week. Now I hope to see them grow, then I hope to enjoy eating them.
There was one other thing that I wanted to fill you in on. It was regarding my new Doc. and his new chemo regimen. That will have to wait till next time. I am TOO TIRED.
As for now, please keep your fingers, toes, eyes, and legs crossed for me on CT Scan Friday.
Tom C., your right the sun makes everything a little better, I've been spending a bunch of time outside... I just love the spring.
Erika, thinking about you, wishing things were different for the both of us.
My last appointment with the Doc. was not the way I had scripted it to be. He must not have received the "final cut." Seriously though, he was only able to drain a little over 1 liter this time. Ya, I say pooh to that. He had to schedule an appointment to have the perma-catheter put in. He then told me it was time to be taken off this chemo because it didn't appear to be working. Then I said, I have just now only received one full doses of the stuff, How can you say for sure that it is not working?? He then said, I will order you a CT.Scan this Friday. I think to myself... much better.
Now two days after my "catheter" appointment... still retaining fluids but this time not only in tummy but also in legs, ankles, feet, toes, and other places I thought not possible. This time I think man this is it! Maybe my Doc. knows that my body is saying that enough is enough. So, I call him, let him know whats going on and ask him about that catheter as I could desperately use one about now. He tells me he is sorry but it is going to be at least two weeks. As for the time being I must go to the Doc. in oncology to have my fluids drained... the bad news is that he can only drain my abdomen... as for my other extremities... well he prescribed a water pill. I can only hope this can bring some form of relief. If not, I really don't know what will happen next.
Now I am starting to fade... yeah!! Sleepy time.
Just a few more things and I think I will have brought you up to date with all my drama. I recently fired my Oncologist of three years. Three years to long anyway. Her attitude was becoming really pessimistic, now I know that they need to remain realistic but I felt like she had given up on me. Frankly, I am not ready to quit so I found a new Doc., one who still had some trix up his sleeves. Imagine that, and my last Dr. said that there was "really nothing more that could be done" and "have you thought about ending treatments." I will quit when I am ready, my body will know. My body will know better than some Doc. will. In fact here is something I find remarkable. My last Doc. said I would last 6-8months with out treatment and even more discouraging my new Oncologist said that the average person with my type of DX would last no longer than 4-6months. Keeping that in mind, I have not had a successful treatment since July of 2006. So it has now been 8 months. Granted, I know things could go terribly wrong from this point but it just does not seem that way. I am not bed ridden, I can still eat (to much) go on errands, hell I even planted my first veggie garden this week. Now I hope to see them grow, then I hope to enjoy eating them.
There was one other thing that I wanted to fill you in on. It was regarding my new Doc. and his new chemo regimen. That will have to wait till next time. I am TOO TIRED.
As for now, please keep your fingers, toes, eyes, and legs crossed for me on CT Scan Friday.
Tom C., your right the sun makes everything a little better, I've been spending a bunch of time outside... I just love the spring.
Erika, thinking about you, wishing things were different for the both of us.






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Post a Commentlori, will be praying for you from the Philippines. you're in my thoughts. my cousin is fighting leukemia and had the water retention problem. she's better now.
take care.
cecile/chuvaness
i've got EVERYTHING crossed. and you've started a veggie garden?!!!... i am officially jealous. xo.
That's my GIRL!!!
That's what I like to read and see, the SPUNKY little gonna kick cancer's arse kid who fanned the flame in me to focus my hate at cancer and do something constructive with it.
I am proud of you for firing your previous Onco.
I am happy that you have been and continue to take the reigns in this battle royale.
Little one, YOU are my inspiration.
As I keep telling everyone (including the docs), I've been above average my whole life. Someone's gotta be the statistical outlier, and it might as well be you (and me!!) I'm crossing my fingers on Fri. for you and Cary.
Tom
Always thinking about you since I found your blog. Just wanted to let you know I'm sending lots of positive thoughts and prayers your way. Sounds like the new doc is at least open to trying everything!
Keep us posted on the veggies. I will never have a veggie garden, as my thumbs are both black. Sigh...
Every single possible digit is crossed. I like your attitude girl. Besides, the docs are supposed to work for you right? You are the boss and you know your body best. This new doc sounds like they aren't ready to give up either. Good stuff.
Good luck on Friday!!!
You are such an inpiration... never look at statistics, we are all individuals, they mean nothing. It's been 8 years for me & I'm not ready to give up just yet.
Hugs baby girl!
Best of luck. Keep holding on, I know it's tough.
Lot's of people are sending their love and hope.
Lori, keep that positive attitude and spirit as it can work miracles for you dear. Enjoy the veggies you'll get, they'll be good for you. You are in my thoughts and prayers always. Arlene
good for you, lori. you and i have learned that when a doctor stops listening to you, it's time to move on. sometimes your gut just tells that all they can do is all they, themselves, know to do.
i was really glad to hear that you're eating well, are out and about and are starting you're garden up. i've spent some time outside getting the pond back in shape after a winter of neglect that, thankfully, the fish haven't seemed to noticed. that kind of stuff does do something for the soul.
i love you guys...
Hey Lori! I've been thinking of you lately and Paul/Amiko sent me the link to your blog today! Keeping fingers, toes etc crossed for Friday!
Big hug!
I've got everything crossed (even my eyes, heh) for your scan. You sound tough and good, and I'm glad you fired your oncologist.
Thinking of you,
lor/abigail
Friends,
A new Web site dedicated to Cancer, ALS and Hospice Care launched yesterday: 3Reasons.org
The site is for A Ride for Three Reasons. 65-year-old cancer survivor Bob Lee of Barrington, IL will ride his bike 6,500 miles across America to support Cancer, ALS and Hospice Care.
Have a look at the site and feel free to contribute. We've raised over $200,000 so far and we're going for $500,000.
-Chris
Visit A Ride for Three Reasons
Dear Lori, Ive been reading and thinking about you a little bit more than a year. First of all I have to tell you that my english is bad, a apologize. Right now I want to say that I completely agree with you in never stop fighting but what I think is that you should make sure what are you really fighting....let me tell you a story... my Mom was dx with leukemia 6 years ago, she was told that her chances to survive chemo were 40/60% and if she survived they were giving her no more than two years before a relapse, without chemo about three easy months living an almost normal life in which the worse will be feeling tired until she bleed to death... so she decided not to get the chemo cause above of all she needed to be isolated from us,her two daughters and she didnt want to be alone if they were going to be her last days... I was so upset thinking she was giving up, I begged her to take the chemo instead of sitting just waiting for the death to take her....I remembered her telling me not to be afraid, instead of thinking on her inminent death she said to me that this should be a great lesson for me, that I needed to learn, and she made me promess to try while being alive never to fear death and to live with the knowledge that I was going to die someday and that day was closer day by day... could you imagine me at that point??? I didnt understood I was so scared of losing her, she was my best friend, Lori, 4 months later she was travelling to welcome my sisters baby, my moms first grandson, after that she decided to live a very relaxed life, she was meditating for two hours everyday, she was into eastern traditions, she was happy, she read and read, she was in peace, I wish you had known her, she brought peace to everyone. Lori, she lived an unbelievable healthy life for five more years but last years january the leukemia came back, she had a brain hemorrhaghe, pneumonia, all kind of infections, thrombosis, she was in horrible pain, I was asking all gods to take her, but they didnt, she got better and lived again in perfect health for another four months until a massive hemorraghe came from nowhere hours after she called me wishing me a happy bday.., she died last june, she was amazing and beautiful, she fight until the end, in her case she fight against the fear of death, she used to say that her body was sick but not her, she wasnt scared, she had plenty of opportunities to prepare for the last day, you dont need to imagine how it is to be told you have just days...but instead of being mad she always was ready for whatever was coming up, what Im trying to tell you by sharing this with you is that this f...ing cancer doesnt respect the ones who fight from the ones who dont, the good people form the bad, the old from the young, it doesnt respect anything or anyone and I wish with all my love that you could be prepared for whatever happens, you have time to be ready and if you get better you will be a better and stronger person, with no fears, dont let anyone stop your fight but dont let yourself fill with fear or anger, (being upset and scared is ok, I hope youll catch what I mean) no one deserves this disease, I wish I could be with you, I wish I could hold you and say to you all thats in my heart, you have too much to do and to give i know, but know that theres a lot you have done, maybe your body its tired, maybe it just need a break, who the hell knows??? but you are the only one who can make a difference in how you live and how you are going to die, we dont know if our death is going to be in pain, in peace? fast, slow? but we can control our fear, dont be afraid!!! live with no fear. Lori, if for some reason you feel this is completely wrong, let it go, erase it and I apologize, I just wanted to share my love and pain for the lost of my mom.
Sending you love and peace.
Thinking about you, hope your scan shows improvement *hugs*
Just checking in to see how you're doing...
Just checking in to see how you were going and see how the scan went.
Hi Lori,
I'm such a dork, somehow I wasn't getting your updates here on your Blog. Sorry I haven't read anything for a while. Looks like you have a huge wonderful group of supporters here.
Love you and see you Sunday!
Sister-Kizzy
Be strong. Post soon. We are all following your journey.
Thinking, worrying & praying for you daily, Love you much ((((Lori))) *hugs*
checking in again to see how you are...
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