Saturday, July 28, 2012
update july ct scan
i have been off chemo since feb waiting for my metestatic uterine cancer to flair up. as promised, tumor markers increased and ct showed significant progression. we returned to the first combo that shrunk everything last year, taxol/carboplatin. i started this regimen july 17. i will get three treatments then another ct scan. if making progress we will continue with the last three treatments. most of the time i will get them every three weeks with a delay so we can go to captiva island fla with danny and donelle. really looking forward to that. i will be bald for the third time in a couple of weeks. yes i know it's just hair.
this is my forth round. i am afraid the doc's predictions are coming true too soon, that my life will be shorter. don't want to borrow trouble but i know reality too.
i try to live life well and trust God. yet i know most do not get their miracle. i need peace and strength for the road ahead, whatever that is. i am not giving up so don't think that. i still have too much to experience.
Thursday, May 17, 2012
waiting game.....
I'm not really much of a blogger. I notice it has been 2 months since my last update. I have more of a "negative" slant to me, I know "shocker", and I don't want to fill this with downer stuff. Another thing I need to work on! "Shocker" again!
We have been in a waiting game since my last chemo. We began chemo in Nov because my tumor markers were rising and the CT scan showed the lymph node was growing. I was unable to tolerate the complete number of treatments of both Gemzar and Taxotere. They were too toxic. The positive things they accomplished was the markers lowered a bit and stabilized and the tumor essentially stopped growing. We were hoping for everything to decrease.
I was too weak to continue chemo after the above. The doc wants me to wait as long as I could before starting another drug. Evidently, the longer you wait between drugs the better you are survival wise. And that's where we are.
I still am unable to tolerate much activity. I tired easily. I moved David's golf bag and even that made me out of breath. My stamina is still low.
I must admit that while everyone is ecstatic about the current state of tumor and markers being stable I want to just get it over with so I can move on.
We did another CT yesterday, and markers Tues. Markers are down 2 points and CT is unchanged.
I am trying to accept that at least I have more time not actually having chemo. Believe me, chemo is HELL. And I do not say that lightly.
Not only the physical part of it. The mental part of it. And some folks treat you differently. People are uncomfortable seeing me bald. They keep things from me thinking it is too much for me. Stay away so as not to stress me out or make me feel bad.
I get it. They don't know what to say. They don't want to cause me pain or discomfort. But if they only knew how lonely that makes me feel. Out of the loop. And I get energy from people. Others are not like that but if you really know me then you know that.
The doc told me early on, when we found the metastasis, to live my life. I need all of you to that!
I hate missing stuff!!!!
love, diane
We have been in a waiting game since my last chemo. We began chemo in Nov because my tumor markers were rising and the CT scan showed the lymph node was growing. I was unable to tolerate the complete number of treatments of both Gemzar and Taxotere. They were too toxic. The positive things they accomplished was the markers lowered a bit and stabilized and the tumor essentially stopped growing. We were hoping for everything to decrease.
I was too weak to continue chemo after the above. The doc wants me to wait as long as I could before starting another drug. Evidently, the longer you wait between drugs the better you are survival wise. And that's where we are.
I still am unable to tolerate much activity. I tired easily. I moved David's golf bag and even that made me out of breath. My stamina is still low.
I must admit that while everyone is ecstatic about the current state of tumor and markers being stable I want to just get it over with so I can move on.
We did another CT yesterday, and markers Tues. Markers are down 2 points and CT is unchanged.
I am trying to accept that at least I have more time not actually having chemo. Believe me, chemo is HELL. And I do not say that lightly.
Not only the physical part of it. The mental part of it. And some folks treat you differently. People are uncomfortable seeing me bald. They keep things from me thinking it is too much for me. Stay away so as not to stress me out or make me feel bad.
I get it. They don't know what to say. They don't want to cause me pain or discomfort. But if they only knew how lonely that makes me feel. Out of the loop. And I get energy from people. Others are not like that but if you really know me then you know that.
The doc told me early on, when we found the metastasis, to live my life. I need all of you to that!
I hate missing stuff!!!!
love, diane
Thursday, March 15, 2012
time for update.
since it has been a while and there is news it is time.
midway ct was last week. results:
most of the lung tumors/nodules are essentially not noted or much improved
lymph node near aorta is a couple of millimeters larger with and area of less density that could be necrosis or dead tissue
tumor markers coming down
so, doc does not see this as progression so we will continue on course with rest of treatments
there are issues however:
i am not doing well on this drug
the last couple of cycles have been hard
extreme fatigue, hands peeling, peeling rash on face
saw doc monday, taxotere is too toxic for me
we have to stop for a break to get me feeling better and get relief for the side effects
taking a few days of extra steroids for that
we will continue with another drug, perhaps return to taxol that i rec'd last year since i seemed to tolerate it better and the cancer responded to it
my right ear is roaring and seems "plugged"
saw ent doc, there is slight hearing loss in that ear
either chemical cause or tumor, no infection or fluid, but inner ear or nerve problem
had mri of head tonite, will get results tomorrow
how am i doing?
scared that without chemo it will start to grow again, it did before
why since the drugs seem to be doing a number on me can't it kill the damn cancer
my faith is low, it gets harder as time goes on
i am afraid that until i genuinely tell God "whatever" He will not heal me
i know in my heart i am at His mercy and "whatever" is what is in there
but i still don't want it to be over yet
just cannot help it
some friends assured me they are my "aaron" and will have faith for me
if you don't know the story of moses and his brother aaron look it up, it is great encouragement
i need lots more "aarons".........
midway ct was last week. results:
most of the lung tumors/nodules are essentially not noted or much improved
lymph node near aorta is a couple of millimeters larger with and area of less density that could be necrosis or dead tissue
tumor markers coming down
so, doc does not see this as progression so we will continue on course with rest of treatments
there are issues however:
i am not doing well on this drug
the last couple of cycles have been hard
extreme fatigue, hands peeling, peeling rash on face
saw doc monday, taxotere is too toxic for me
we have to stop for a break to get me feeling better and get relief for the side effects
taking a few days of extra steroids for that
we will continue with another drug, perhaps return to taxol that i rec'd last year since i seemed to tolerate it better and the cancer responded to it
my right ear is roaring and seems "plugged"
saw ent doc, there is slight hearing loss in that ear
either chemical cause or tumor, no infection or fluid, but inner ear or nerve problem
had mri of head tonite, will get results tomorrow
how am i doing?
scared that without chemo it will start to grow again, it did before
why since the drugs seem to be doing a number on me can't it kill the damn cancer
my faith is low, it gets harder as time goes on
i am afraid that until i genuinely tell God "whatever" He will not heal me
i know in my heart i am at His mercy and "whatever" is what is in there
but i still don't want it to be over yet
just cannot help it
some friends assured me they are my "aaron" and will have faith for me
if you don't know the story of moses and his brother aaron look it up, it is great encouragement
i need lots more "aarons".........
Tuesday, February 7, 2012
anticipation....
yes, it is 330am est. I have second dose of "poison" of this round 3 in just a few hours. I start feeling better, then they hit you, knock you down. I've done this before. I know it will be awful for days, I know I will feel better in a while. but then I know next time it will be worse. It will be worse every time.
the rollar coaster of emotions. better on days I feel better. crappy on the days I don't.
If this disease could just stay the same. If I have to take multiple rounds of chemo then so be it. I have never felt the cancer. I never knew it had spread. it jumped out on a ct scan. I had just done awaited with my church family. it was an amazing time. I met great folks I would not have met and they have so enriched my life. it would be just 11 short days later my life changed forever. thanks to cr's, especially my "purple girls".
my freshwinds friends carried me through. I hope they know but maybe they don't really realize. I have never experienced friends like this before.
david has stepped up and taken care of me. as some of you know, it is me that is suppose to take care of him. this last year our insurance company spent more money on me than many previous years when david was sick. this was never suppose to be. I am the nurse, it is my job.
last year people kept telling me to fight. I did not know how much good if any that would do. one doc called me a "fatalist" because my attitude was one that God had it all planned out anyway.
I am not so sure now. I do believe that God has a beginning and end determined. but what goes in between seems not so much a divine plan or blueprint. we have free will to choose. we try to do the right thing. but do we always choose the best. I know I don't.
God's original plan was not for us to have death, disease, problems, etc. His plan was to be paradise.
then came the choice of adam and eve in the garden. paradise gone. death, disease, destruction now the norm. God never planned this. He does not do this to "teach us a lesson".
God does deliver us from death, disease and destruction,just like He delivers from sin.
so, just maybe there is something to be gained in fighting against this terrible disease. why else would someone take this "poison" in hopes of being found "no evidence of disease". I will keep fighting.
the rollar coaster of emotions. better on days I feel better. crappy on the days I don't.
If this disease could just stay the same. If I have to take multiple rounds of chemo then so be it. I have never felt the cancer. I never knew it had spread. it jumped out on a ct scan. I had just done awaited with my church family. it was an amazing time. I met great folks I would not have met and they have so enriched my life. it would be just 11 short days later my life changed forever. thanks to cr's, especially my "purple girls".
my freshwinds friends carried me through. I hope they know but maybe they don't really realize. I have never experienced friends like this before.
david has stepped up and taken care of me. as some of you know, it is me that is suppose to take care of him. this last year our insurance company spent more money on me than many previous years when david was sick. this was never suppose to be. I am the nurse, it is my job.
last year people kept telling me to fight. I did not know how much good if any that would do. one doc called me a "fatalist" because my attitude was one that God had it all planned out anyway.
I am not so sure now. I do believe that God has a beginning and end determined. but what goes in between seems not so much a divine plan or blueprint. we have free will to choose. we try to do the right thing. but do we always choose the best. I know I don't.
God's original plan was not for us to have death, disease, problems, etc. His plan was to be paradise.
then came the choice of adam and eve in the garden. paradise gone. death, disease, destruction now the norm. God never planned this. He does not do this to "teach us a lesson".
God does deliver us from death, disease and destruction,just like He delivers from sin.
so, just maybe there is something to be gained in fighting against this terrible disease. why else would someone take this "poison" in hopes of being found "no evidence of disease". I will keep fighting.
Sunday, January 22, 2012
round 3 number 1
well, it's a good thing I have 2 weeks to recover til next dose. haven't left house since I got home from dinner with david and bill wed nite. showers wear me out so david got me a shower chair. yep, I am the owner of my first old lady equipment, unless you count the tight hose so my legs won't swell so much! at least the chair helps so I don't get so out of breath in the shower before my legs give out.
I spend my days watching reruns of ncis and criminal minds watching the clock for the next time for my pain pills. don't freak out you religious people but I was tempted to add some rum to the mix. I understand why people in pain do that. don't worry, I am very careful with my pain meds.
I also understand why people went to kavorkian! I could not do it but I understand more now than when I took care of people who were dying.
my head is tingling in anticipation of my hair failing out in a couple of weeks. dustin, get your clippers ready.
I have found it does not matter how comfortable your chair is when you are in it 24/7!
it amazes me when grown men think they are "all that" when they catch a football and score points. yeah, I love football season and miss it every year when it it over but come on. Find a cure for say cancer, then I will say you're "all that".
sorry, you caught me on a bad day, and this is just a bit better than the last few.......just saying!
I spend my days watching reruns of ncis and criminal minds watching the clock for the next time for my pain pills. don't freak out you religious people but I was tempted to add some rum to the mix. I understand why people in pain do that. don't worry, I am very careful with my pain meds.
I also understand why people went to kavorkian! I could not do it but I understand more now than when I took care of people who were dying.
my head is tingling in anticipation of my hair failing out in a couple of weeks. dustin, get your clippers ready.
I have found it does not matter how comfortable your chair is when you are in it 24/7!
it amazes me when grown men think they are "all that" when they catch a football and score points. yeah, I love football season and miss it every year when it it over but come on. Find a cure for say cancer, then I will say you're "all that".
sorry, you caught me on a bad day, and this is just a bit better than the last few.......just saying!
Tuesday, January 10, 2012
poison called gemzar
It's time to let you know what's going on.
After 5 of 6 gemzar treatments the poison the side effects did me in. I was dehydrated but very swollen. Had to have IV fluids at home over a weekend. Blood work not doing well. Nauseated. You probably get the idea. I had a CT to see if there were blood clots causing the swelling or perhaps the cancer had progressed. Neither were great choices.
The CT scan showed the lymph node had at least halted growth. No improvement but no growth either. Since the side effects were taking their toll on me, lowering my quality of life, the 6th gemzar was not given.
Today we saw the doctor. We need to change drugs. The goal is to shrink the node. If we do nothing it will grow. So, next Tuesday we start Taxotere. This week is a rest week. We need to get going on this.
Here's the hitch. Gemzar is the only drug that would let me keep my hair. So, in about 4 weeks I will be bald again. He was concerned how I felt about that. The only answer is it's just hair. My choices are no hair and continue in attack mode or keep my hair and let the cancer go. I just can't do that.
David told the doctor that we had found that women with metastatic uterine cancer only live a year. The doctor said that's right. Kind of sobering. But my DDD (drop dead date) was Jan 4. My CT scan was one year to the day that we found metastatic disease last Jan. So we have done really well, beat the odds if you will. God used poison to give me time. Precious time.
I was so hoping the first round of treatments beginning last Jan would do the trick. I have found out one thing. It's not so easy to trust this time around. Especially when I feel so bad. I know God sees my heart and I try to rely on that truth. Jeremiah 29:11 is still true no matter how I am feeling or whether I "trust" or not. God is still in charge even when my faith is not so high.
David is realizing we are doing just that. Buying time. He knew it but it is hitting him again. It is a sobering thought. Actually, we are all on borrowed time. I am reminded again, we are all at His mercy. Live the best life you can. He's God................
After 5 of 6 gemzar treatments the poison the side effects did me in. I was dehydrated but very swollen. Had to have IV fluids at home over a weekend. Blood work not doing well. Nauseated. You probably get the idea. I had a CT to see if there were blood clots causing the swelling or perhaps the cancer had progressed. Neither were great choices.
The CT scan showed the lymph node had at least halted growth. No improvement but no growth either. Since the side effects were taking their toll on me, lowering my quality of life, the 6th gemzar was not given.
Today we saw the doctor. We need to change drugs. The goal is to shrink the node. If we do nothing it will grow. So, next Tuesday we start Taxotere. This week is a rest week. We need to get going on this.
Here's the hitch. Gemzar is the only drug that would let me keep my hair. So, in about 4 weeks I will be bald again. He was concerned how I felt about that. The only answer is it's just hair. My choices are no hair and continue in attack mode or keep my hair and let the cancer go. I just can't do that.
David told the doctor that we had found that women with metastatic uterine cancer only live a year. The doctor said that's right. Kind of sobering. But my DDD (drop dead date) was Jan 4. My CT scan was one year to the day that we found metastatic disease last Jan. So we have done really well, beat the odds if you will. God used poison to give me time. Precious time.
I was so hoping the first round of treatments beginning last Jan would do the trick. I have found out one thing. It's not so easy to trust this time around. Especially when I feel so bad. I know God sees my heart and I try to rely on that truth. Jeremiah 29:11 is still true no matter how I am feeling or whether I "trust" or not. God is still in charge even when my faith is not so high.
David is realizing we are doing just that. Buying time. He knew it but it is hitting him again. It is a sobering thought. Actually, we are all on borrowed time. I am reminded again, we are all at His mercy. Live the best life you can. He's God................
Wednesday, December 21, 2011
the last month.....
I know I have not updated for a while. I had three treatments, one per week, then due to low blood counts had to take a break. Gemzar does a number on your blood counts.
On Dec 17, last Saturday, Dustin married Jessica. The new Mr and Mrs Orner are in Mexico on their honeymoon. We are now officially "empty nesters". In exchange our family has grown and no one had to get pregnant and give birth!
We all had a great time. The Orner and Glaser families are so blessed!
My break ended yesterday with the 4th treatment. We start again and I have to tell you I do not look forward to the next few weeks. I will have follow up CT when the 6th treatment is done. Not sure when that will be due to the blood count issue. Fatigue is a big deal with Gemzar too along with feeling like I have the flu without actually having it. My oncologist is taking good care of me doing all he can to make me feel as good as possible. He can only do so much.
I know it seems weird or something to post about Dustin and Jess' wedding then follow with cancer stuff. But, that is what life is. Both good and bad. It comes to us all. It is no respecter of persons. God tells us that.
So life goes on. We celebrate life and at the same time fight the bad. I still want my miracle. I was reminded tonight this cancer, as all our issues, problems, baggage etc belong to Him. So does the good. He promises to take care of us. The tricky part is to let God do what he does!
On Dec 17, last Saturday, Dustin married Jessica. The new Mr and Mrs Orner are in Mexico on their honeymoon. We are now officially "empty nesters". In exchange our family has grown and no one had to get pregnant and give birth!
We all had a great time. The Orner and Glaser families are so blessed!
My break ended yesterday with the 4th treatment. We start again and I have to tell you I do not look forward to the next few weeks. I will have follow up CT when the 6th treatment is done. Not sure when that will be due to the blood count issue. Fatigue is a big deal with Gemzar too along with feeling like I have the flu without actually having it. My oncologist is taking good care of me doing all he can to make me feel as good as possible. He can only do so much.
I know it seems weird or something to post about Dustin and Jess' wedding then follow with cancer stuff. But, that is what life is. Both good and bad. It comes to us all. It is no respecter of persons. God tells us that.
So life goes on. We celebrate life and at the same time fight the bad. I still want my miracle. I was reminded tonight this cancer, as all our issues, problems, baggage etc belong to Him. So does the good. He promises to take care of us. The tricky part is to let God do what he does!
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