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!
Friday, November 18, 2011
Here we go, Chemo Round 2 #1,
The first treatment was Tuesday Nov 15. There will be 6 treatments in total given once a week skipping a weak when blood counts get too low. And then there's the wonderful fatigue. Oh yes, the yucky feeling that hits a couple of days after the infusion.
This round is due to that stubborn lymph node near my aorta the has now decided to grow accompanied by rising CA 125. It sucks.
This time I decided to not try to be brave enduring the yuk feeling and muscle pain and take pain meds on the bad days. There are no medals for suffering through chemo treatments.
And that is what I am doing today. If you called and I did not answer, I don't feel like taking. Besides, I am drunk today!
I have made special requests not to be given advice, preached at, and not to hear about your relatives with cancer etc. Thanks to those who honored my request.
I want to live as normal as possible as long as I can so I tried to go to the first Awaited rehearsal this week without success. I did however receive support and encouragement in the form of we love you's, come hang out whenever you can, and an "on the spot" prayer for my peace and strength. Thank you Paula!
I have a lot of movies to catch up on. Maybe next week.
The first treatment was Tuesday Nov 15. There will be 6 treatments in total given once a week skipping a weak when blood counts get too low. And then there's the wonderful fatigue. Oh yes, the yucky feeling that hits a couple of days after the infusion.
This round is due to that stubborn lymph node near my aorta the has now decided to grow accompanied by rising CA 125. It sucks.
This time I decided to not try to be brave enduring the yuk feeling and muscle pain and take pain meds on the bad days. There are no medals for suffering through chemo treatments.
And that is what I am doing today. If you called and I did not answer, I don't feel like taking. Besides, I am drunk today!
I have made special requests not to be given advice, preached at, and not to hear about your relatives with cancer etc. Thanks to those who honored my request.
I want to live as normal as possible as long as I can so I tried to go to the first Awaited rehearsal this week without success. I did however receive support and encouragement in the form of we love you's, come hang out whenever you can, and an "on the spot" prayer for my peace and strength. Thank you Paula!
I have a lot of movies to catch up on. Maybe next week.
Wednesday, November 9, 2011
Today I had my every three month CT scan.
Here are the findings:
The lung tumors are responding well, some even smaller than before, some
the same, some even gone.
The lymph node near my aorta is not fairing so well. It has started to
grow.
The tumor markers are also elevated ( blood work ).
Therefore, i will begin chemo next week. A different drug than last time.
The main side effect is fatigue, like I don't know about that!
I will keep my hair this time. Apparently the other side effects seen with
chemo agents are not likely with this drug. I will have one treatment a
week for 6 weeks then scan again. ( am I glowing yet? )
The good part is that they are trying to "nip it, nip it in the bud" as
barney fife would say.
The discouraging part is that they have to do it at all.
love you, family, can I call you that?
Feelings yet to be figured out!
Tuesday, October 25, 2011
it is now october....
I saw the movie 50/50 twice. It's a movie about a young man,27, diagnosed with a rare, invasive spinal tumor. the name was very long and even though I am a nurse it's too much for me!
Anyway, 50/50 is a "dark" comedy, not one of those sugary, sappy cancer movies. I really identified with the emotions and reactions of Adam. The initial diagnosis, disbelief, shaving the head when the hair started to fall out. Not wanting to, not wanting to believe it but the hair was coming out in handfuls. Didn't want to walk around with bald spots. The screaming all by myself really loud. Wishing everyone would stop telling me I would be ok. No one knows that.
Maybe God will heal me. Can He? Absolutely! Will He? I don't know. Am I doing well right now? Yes for sure. But I have to be honest with myself. To do otherwise will serve no useful purpose.
Even though I get really tired I am going to watch my grandsons Nick and Blake play their football games, watch Haley cheer her heart out every time I can. Blake has decided to take up wrestling. So, I'll be doing that too. I am gonna be with my children as much as they can stand me. I'm going to dance at Dustin's wedding, enjoy our new daughter Jess.
The only place I wanted to see is Hawaii. This has been made possible through a generous gift from some awesome people. Thanks so much. You know who you are. We will have personal tour guides also known as friends that "snowbird" in Honolulu. Now that's the life.
During chemo I did not miss any Fresh Winds engagements and don't intend to miss any in the future. You might need to prop me up, but I will be there. Sounds like Michael Jackson, oh my.
BTW, If you are easily offended, don't go see the movie.............love to all.
Thursday, September 1, 2011
keeping you updated more often .....
saw a friend tonight that has been checking my blog for updates. told her I did not have anything to say. I did kind of leave you hanging by not giving you the "final" results of my ct scan.
final result was almost the same. it read "most" of the lung tumors were still smaller than the previous scan in May. the peri-aortic lympn node was unchanged. Stubborn little sucker, to quote Julia Roberts in Pretty Woman when she flipped that oyster, or whatever it was, across the restaurant. now that I think about it she said slippery little sucker. still funny.
but now I am having severe right arm pain. had venous dopplar study for clots, none. had neck and right shoulder mri, found some issues but the torn long tendon on the biceps muscle seems to be the culprit. also had xrays on right are, no tumors on right arm and shoulder, that's great. so, steroid injection right anterior shoulder joint. do some exercises. now lets see what happens.
the medical community does not expect the tumors to be "gone". their goal is to reduce them and no new sites. now I can live with that. but I will not be satisfied until they're gone. that's my goal.
now about those dark places. you really did not think they would go away did you? they are never far away. I do know some things are almost guaranteed to lift me above them or at least to the top half of them.
my traveling worship choir, Fresh Winds. whether practicing, performing, or just hanging out that does it. and crossroads. especially last wednesdays. if you have never been, you don't know what you are missing. there is no adequate way to describe it. it's one of those things you just have to be there......
tonite brian shared with us that God wants us to take adventures. now this adventure I'm on would never have been my choice but I know that God is and will do things in me and my family that could never have happened on another path. as you can imagine we have not seen all these as yet. guess He'll just have to keep me around for a while huh? no harm in asking for sure.
final result was almost the same. it read "most" of the lung tumors were still smaller than the previous scan in May. the peri-aortic lympn node was unchanged. Stubborn little sucker, to quote Julia Roberts in Pretty Woman when she flipped that oyster, or whatever it was, across the restaurant. now that I think about it she said slippery little sucker. still funny.
but now I am having severe right arm pain. had venous dopplar study for clots, none. had neck and right shoulder mri, found some issues but the torn long tendon on the biceps muscle seems to be the culprit. also had xrays on right are, no tumors on right arm and shoulder, that's great. so, steroid injection right anterior shoulder joint. do some exercises. now lets see what happens.
the medical community does not expect the tumors to be "gone". their goal is to reduce them and no new sites. now I can live with that. but I will not be satisfied until they're gone. that's my goal.
now about those dark places. you really did not think they would go away did you? they are never far away. I do know some things are almost guaranteed to lift me above them or at least to the top half of them.
my traveling worship choir, Fresh Winds. whether practicing, performing, or just hanging out that does it. and crossroads. especially last wednesdays. if you have never been, you don't know what you are missing. there is no adequate way to describe it. it's one of those things you just have to be there......
tonite brian shared with us that God wants us to take adventures. now this adventure I'm on would never have been my choice but I know that God is and will do things in me and my family that could never have happened on another path. as you can imagine we have not seen all these as yet. guess He'll just have to keep me around for a while huh? no harm in asking for sure.
Sunday, August 7, 2011
dark places....
yes, that's where I am. one of those dark places I can go so easily. this time it not only affects me.
I have been guilty of pushing folks away. many folks have told me how good my new hair looks. I start to believe them then I see myself in a mirror or a picture. my friends try to encourage me but I push them away. I could wear my wig. I could use a "do rag". I am tired of those. it really doesn't help for people to try to encourage me. I get overwhelmed with folks making over me. I know that's not normal, that I should not feel that way. but I am not normal, especially now. this is uncharted territory for me. only thing I can figure is that I am self conscious about it and embarrassed. when I look at myself I see a bald headed old lady. I can't help it.
my intent is not to hurt anyone's feelings but I am sure that is what has happened. I am sorry. please forgive me if you can.
I have been guilty of pushing folks away. many folks have told me how good my new hair looks. I start to believe them then I see myself in a mirror or a picture. my friends try to encourage me but I push them away. I could wear my wig. I could use a "do rag". I am tired of those. it really doesn't help for people to try to encourage me. I get overwhelmed with folks making over me. I know that's not normal, that I should not feel that way. but I am not normal, especially now. this is uncharted territory for me. only thing I can figure is that I am self conscious about it and embarrassed. when I look at myself I see a bald headed old lady. I can't help it.
my intent is not to hurt anyone's feelings but I am sure that is what has happened. I am sorry. please forgive me if you can.
Monday, August 1, 2011
time...............issues.............
time, it's unpredictable. precious. fleeting. scary. passes too quickly. allows us to enjoy. love. experience both happiness and pain. to live. love. laugh.
i am very aware that at any time one of my many doctors could tell me that the tumors are active. i am only as confident as my last scan or test.
now i want to spend as much time as possible with the ones that are close to me, the ones that i love. everyone has their own lives and lives are so full. there just isn't enough time to go around. i do hope we don't run out before doing all the things that we so want to do.
then there are "issues". we all have them. and you know what? they are still there when you get sick or some catastrophe forces it's way in to your life. don't know what to do about it. i guess some of the issues are not worth carrying around. others don't seem so important after all. but others you just can't seem to shake off. oh if there could be a magic wand to make all things different. but we all know better don't we........
i wish we had prepared better for retirement. i would be so tempted to retire now and spend lots of time with the 8 people i love the most....david, michelle, bill, haley, nick, blake, dustin and jess.
but if i had that much time on my hands i would only get myself in to trouble. i would sit at home and go to that "dark place" too deep and too often. besides, i need the distraction. and the money. gotta have money to be off work cause i like to shop. don't have time to shop when working.....
so until i can retire i will just have to be satisfied with how much free time we have to be together. i hope we can make the most of it.
i love you all!
i am very aware that at any time one of my many doctors could tell me that the tumors are active. i am only as confident as my last scan or test.
now i want to spend as much time as possible with the ones that are close to me, the ones that i love. everyone has their own lives and lives are so full. there just isn't enough time to go around. i do hope we don't run out before doing all the things that we so want to do.
then there are "issues". we all have them. and you know what? they are still there when you get sick or some catastrophe forces it's way in to your life. don't know what to do about it. i guess some of the issues are not worth carrying around. others don't seem so important after all. but others you just can't seem to shake off. oh if there could be a magic wand to make all things different. but we all know better don't we........
i wish we had prepared better for retirement. i would be so tempted to retire now and spend lots of time with the 8 people i love the most....david, michelle, bill, haley, nick, blake, dustin and jess.
but if i had that much time on my hands i would only get myself in to trouble. i would sit at home and go to that "dark place" too deep and too often. besides, i need the distraction. and the money. gotta have money to be off work cause i like to shop. don't have time to shop when working.....
so until i can retire i will just have to be satisfied with how much free time we have to be together. i hope we can make the most of it.
i love you all!
Friday, July 1, 2011
you'll be ok!
haven't updated for a while. yeah, I'm still pink and breathing.
I feel good, just get tired. get out of breath when do anything physical. guess I'll have to not do anything physical. I am working more, getting closer to 40 hours. I am in remission.
went to last wednesday. awesome time of worship. music for the entire time. music speaks to my soul. sometimes, most of the time, it is the only thing that lifts me up.
I put on a good face when I am with people. but I can go to the dark place so easy when I am by myself. sometimes I want to be by myself. it's probably not good for me.
His love endures forever. I gotta remember that. I know He loves me. I've heard it all my life. Sometimes I have to really remember it.
I have folks come up and tell me that they had cancer too. or a family member had cancer. That they have been cancer free for a bunch of years. You will be ok they say. most of them are referring to primary sites, they found it, took it out and it has not come back. I had my primary site in june 2009. I am dealing with metastasis. that changes the whole game. outcomes change markedly when there is metastasis. stage IV is never good news. there I go with "nurse talk" again. unless God intervenes I know what is in store for me. like my sister-in-law says, I know too much.
cancer free is a misnomer. no one can say with certainty that they are cancer free. even those who have never been diagnosed with cancer. you just do not know. it hides and pounces on you and you don't even feel it. the best anyone can say is there is no evidence of disease. that's it. ned. I can't even say that.
the folks that tell me I'll be ok mean well. they want to encourage me. they have the best intentions. I get that. maybe they want to make themselves feel better. it's hard to watch someone go through this and not be able to help them.
maybe the definition of "you'll be ok" needs to be reconciled in me. I think when someone tells me I'll be ok they mean the cancer will be cured, or that I will live a long time. don't get me wrong. I would like nothing better.
when I am told I'll be ok I need to see that the meaning is really what ever God decides for me is ok. If He sees fit to extend my life for many years I'll be ok. if He does not, then I'll be ok too. What ever God decides, I'll be ok.
mean while, life goes on. it was great to see my fresh wind friends at graeter's last nite. ice cream is my greatest down fall. well, that and chocolate. we are going on vaca with the kids to destin. david and I will celebrate our 40th anniversary jul 3. dustin and jess are getting married dec 17th. I am in remission. gonna be a great rest of the year.................
I feel good, just get tired. get out of breath when do anything physical. guess I'll have to not do anything physical. I am working more, getting closer to 40 hours. I am in remission.
went to last wednesday. awesome time of worship. music for the entire time. music speaks to my soul. sometimes, most of the time, it is the only thing that lifts me up.
I put on a good face when I am with people. but I can go to the dark place so easy when I am by myself. sometimes I want to be by myself. it's probably not good for me.
His love endures forever. I gotta remember that. I know He loves me. I've heard it all my life. Sometimes I have to really remember it.
I have folks come up and tell me that they had cancer too. or a family member had cancer. That they have been cancer free for a bunch of years. You will be ok they say. most of them are referring to primary sites, they found it, took it out and it has not come back. I had my primary site in june 2009. I am dealing with metastasis. that changes the whole game. outcomes change markedly when there is metastasis. stage IV is never good news. there I go with "nurse talk" again. unless God intervenes I know what is in store for me. like my sister-in-law says, I know too much.
cancer free is a misnomer. no one can say with certainty that they are cancer free. even those who have never been diagnosed with cancer. you just do not know. it hides and pounces on you and you don't even feel it. the best anyone can say is there is no evidence of disease. that's it. ned. I can't even say that.
the folks that tell me I'll be ok mean well. they want to encourage me. they have the best intentions. I get that. maybe they want to make themselves feel better. it's hard to watch someone go through this and not be able to help them.
maybe the definition of "you'll be ok" needs to be reconciled in me. I think when someone tells me I'll be ok they mean the cancer will be cured, or that I will live a long time. don't get me wrong. I would like nothing better.
when I am told I'll be ok I need to see that the meaning is really what ever God decides for me is ok. If He sees fit to extend my life for many years I'll be ok. if He does not, then I'll be ok too. What ever God decides, I'll be ok.
mean while, life goes on. it was great to see my fresh wind friends at graeter's last nite. ice cream is my greatest down fall. well, that and chocolate. we are going on vaca with the kids to destin. david and I will celebrate our 40th anniversary jul 3. dustin and jess are getting married dec 17th. I am in remission. gonna be a great rest of the year.................
Thursday, May 26, 2011
how do you make a hormone?
You forget to pay her!! har, har......
Sorry but wanted to laugh a bit......
Went to the doctor on Monday. I know that's a surprise, another doctor visit. He was almost ecstatic. Very pleased to say the least. All tumors smaller, remember I was only given a 60% chance of remission. Remission is defined as cancer not active, smaller and no new sites. He did not expect it to go away. I was and still am hoping for a different kind of miracle. The one that the cancer is ALL GONE! It could happen you know!
But for now I started the next therapy. Hormone therapy, hence the lead off joke! It is a form of progesterone. It is to make the remission last longer. It is also used as primary therapy and makes tumors smaller.
The pharmacist told me it is also used to treat anorexia. Now, that is all I need. A life saving drug that could make me eat more. The dose is 5 pills a day. If being treated for anorexia you take all 5 at once. So I will divide the dose! Hopefully it will kill the cancer and not make me eat myself silly!
Took the boys to the movie while Michelle and Haley were at the cheer gym nearby. They split up for the ride back to the gym and Blake rode with me. Upon arriving back at the gym I took off my wig and replaced it with a bandana. I said to him "Look at grandma's bald head". "Is it all over" he asked. "Yes" I replied and I showed him. "That's sad" Blake said. What a tender 7 year old. Then I told him "no, it's not. The medicine is making the cancer smaller. It will grow back". I hope he is ok and does not worry. It is hard to know what's in a kid's mind, you know? I always believed you should be honest with kids. Come to think of it, mine turned out pretty good.
Sorry but wanted to laugh a bit......
Went to the doctor on Monday. I know that's a surprise, another doctor visit. He was almost ecstatic. Very pleased to say the least. All tumors smaller, remember I was only given a 60% chance of remission. Remission is defined as cancer not active, smaller and no new sites. He did not expect it to go away. I was and still am hoping for a different kind of miracle. The one that the cancer is ALL GONE! It could happen you know!
But for now I started the next therapy. Hormone therapy, hence the lead off joke! It is a form of progesterone. It is to make the remission last longer. It is also used as primary therapy and makes tumors smaller.
The pharmacist told me it is also used to treat anorexia. Now, that is all I need. A life saving drug that could make me eat more. The dose is 5 pills a day. If being treated for anorexia you take all 5 at once. So I will divide the dose! Hopefully it will kill the cancer and not make me eat myself silly!
Took the boys to the movie while Michelle and Haley were at the cheer gym nearby. They split up for the ride back to the gym and Blake rode with me. Upon arriving back at the gym I took off my wig and replaced it with a bandana. I said to him "Look at grandma's bald head". "Is it all over" he asked. "Yes" I replied and I showed him. "That's sad" Blake said. What a tender 7 year old. Then I told him "no, it's not. The medicine is making the cancer smaller. It will grow back". I hope he is ok and does not worry. It is hard to know what's in a kid's mind, you know? I always believed you should be honest with kids. Come to think of it, mine turned out pretty good.
Wednesday, May 11, 2011
What we've been waiting for
Chemo done. Scan done, labwork drawn. Verdict in.
Dr Crane called today. Cancer continues to shrink. Tumors smaller than last scan in March. I said everyone wants me to celebrate, but I don't want to. He said yeah I know, but we all need to celebrate more than we do. No one knows what will happen. I will be in remission until the tumors start to grow and/or show up somewhere else. Dr Crane will open a bottle of wine to me tonight!
We will start hormone therapy at my next visit in a couple of weeks. He is researching another treatment too. We will do labwork in 6-8 wks and scan again in 3 months. We are still on the "attack" mode!
Spoke with my friend Leslie today. She is a survivor too. We've known each other since we lived in Nashville. One of those friends that you can pick up right where you left off. Not many of those kind of friends around. She gets it. She was honest enough to tell me the fatigue will last a while. Hers lasted 9 months. Wow definitely not what I wanted to hear. But at least I know.
So since I wasn't sick until I had chemo and the tumors are all smaller, it stands to reason when I finally recover from the chemo I won't be sick. Really looking forward to that!
If anything speaks to me it is music. On American Idol tonight Lauren sang Martina McBride's "Do it Anyway".
Some of the lyrics go like this:
God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yeah I do it anyway, yeah,
You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway
Dr Crane called today. Cancer continues to shrink. Tumors smaller than last scan in March. I said everyone wants me to celebrate, but I don't want to. He said yeah I know, but we all need to celebrate more than we do. No one knows what will happen. I will be in remission until the tumors start to grow and/or show up somewhere else. Dr Crane will open a bottle of wine to me tonight!
We will start hormone therapy at my next visit in a couple of weeks. He is researching another treatment too. We will do labwork in 6-8 wks and scan again in 3 months. We are still on the "attack" mode!
Spoke with my friend Leslie today. She is a survivor too. We've known each other since we lived in Nashville. One of those friends that you can pick up right where you left off. Not many of those kind of friends around. She gets it. She was honest enough to tell me the fatigue will last a while. Hers lasted 9 months. Wow definitely not what I wanted to hear. But at least I know.
So since I wasn't sick until I had chemo and the tumors are all smaller, it stands to reason when I finally recover from the chemo I won't be sick. Really looking forward to that!
If anything speaks to me it is music. On American Idol tonight Lauren sang Martina McBride's "Do it Anyway".
Some of the lyrics go like this:
God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yeah I do it anyway, yeah,
You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway
So, even tho' I don't feel so well right now, even tho' I'm scared this is not over, even tho' I feel alone sometimes, I will celebrate. Do it anyway!
Monday, May 2, 2011
next steps
 |
| last treatment this round notice the bags that hold the "poison" hanging above my head! Before this treatment I had to have a Neupogen injection last Friday. My white blood cells had fallen and this injection helps my bone marrow make new ones so I can have the "poison" take them down yet again. Cannot afford to get an infection as my body will have a difficult time fighting infection without adequate numbers of WBC's! Saw the doc before the treatment as usual. The shot worked, treatment as usual. We will scan again next week and go from there. Also drew tumor marker CA125 today. Both tests will either confirm or deny remission. My cancer is the kind that responds well to hormone therapy. My hormones bit the dust a while ago!!! Not the right hormones anyway. Still have to take the pills. We will start them probably in four weeks. We don't want the hormone therapy to interfere with the poison doing the rest of it's job. We are going to be "aggressive" with this cancer. The hormones will prolong remission, we hope! Even though Dr Crane does believe in prayer and miracles. He has to give me the facts, medically speaking. I appreciate that he told me upfront he will always be honest with me. But he adds, he has been surprised by some of his patients that defied the odds. Overall, statistically speaking, the odds are not in my favor. Uterine cancer is the most common of gynecological cancers and when caught early, removed with no evidence of spreading, has a very good mortality rate. For you non-medical types, they live longer. That was the prognosis given to me in June 2009. That changed January 2011. When uterine cancer metastasizes, spreads, the mortality rate goes remarkably down. Survival rate of 12 months or less. I did warn you not to read my blog if you cannot handle it. I have to know the truth medically speaking. I cannot hide from it. I do not discount miracles. So no sermons needed, at least today. I am remarkably calm today. But I don't feel bad yet. That will come Wednesday.................... This is what I am fighting for, in no particular order:        The rest of you know who you are!!! I love you! PS:David told Dr Crane about his healing when he was hit by a car at 15yrs old. He was in a body cast for several months. One night his mom prayed to God for his healing. You see he was told he would not walk again. She cried out to God, " You COULD if you only WOULD". You all know what happened.................Dr Crane said they should have turned that in for the second miracle for the Sainthood of Pope John Paul II !! He has a great sense of humor. A merry heart doeth good like a medicine! Yay GOD! |
Wednesday, April 27, 2011
the week leading up to Chemo #6
Here I sit as I contemplate my last treatment, for this round at least! What is next? This has sure been a year I would not have chosen. Not even for my worst enemy.
I don't look forward to Monday, sitting there is not too bad. But the days that follow suck. I know the side effects are temporary, I hope. But I still get depressed. I think that I get depressed because I let my thoughts go to the fear place. That I will die a long, drawn out, painful cancer death. That's what I envision. And maybe that is what will happen, eventually.
Today I listened to Max Lucado's Fearless book. He pointed out that God wants us to talk to Him about whatever we are afraid of. Be very honest. He knows anyway. Mine would be, God I am scared, I don't want to die. Take this cancer from me. Kill it. But Your will is what I really want. Max reminded me that this is how Jesus prayed before the crucifixion. Jesus was not so anxious to die either. He begged to be relieved from it. But, he knew it was the Father's plan. It also exemplifies that Jesus understands what I feel. He did it too.
I am self conscious about my lack of hair. Well if Oprah is brave enough to let herself been seen in public without makeup and a fancy hair-do then surely little ole' me can open myself up too.
I don't look forward to Monday, sitting there is not too bad. But the days that follow suck. I know the side effects are temporary, I hope. But I still get depressed. I think that I get depressed because I let my thoughts go to the fear place. That I will die a long, drawn out, painful cancer death. That's what I envision. And maybe that is what will happen, eventually.
Today I listened to Max Lucado's Fearless book. He pointed out that God wants us to talk to Him about whatever we are afraid of. Be very honest. He knows anyway. Mine would be, God I am scared, I don't want to die. Take this cancer from me. Kill it. But Your will is what I really want. Max reminded me that this is how Jesus prayed before the crucifixion. Jesus was not so anxious to die either. He begged to be relieved from it. But, he knew it was the Father's plan. It also exemplifies that Jesus understands what I feel. He did it too.
I am self conscious about my lack of hair. Well if Oprah is brave enough to let herself been seen in public without makeup and a fancy hair-do then surely little ole' me can open myself up too.
 |
| Without makeup, as if you had to be told! |
 |
| With makeup, a little better! |
 |
| Top it all off! |
Monday, April 11, 2011
questions asked and answered--chemo #5
I have felt stronger this past two weeks. I do end up paying for it when I finally get home. So far my blood counts have been ok. Not so this time. White Blood cells have fallen to the level that now I have to return to the office Thurs and Fri this week for possible neupogen shot. Neuopgen stimulates WBC growth in the bone marrow. Will have to do it next week as well.
I asked Dr Crane what his definition of remission was. When the cancer is not active. Not that the tumors are gone, but not active. He would say I am in remission now since tumors are responding and tumor markers are down. We will continue the full treatment plan. Six treatments are all that are indicated.
I asked what if the tumors are gone. We scan at the end of treatment, then 3 months later. What if the cancer does return. Remember Dr Crane fully admits he is not God. He says the next steps would depend on when the cancer returns. It will return. This is not a primary site. I had that already in June 2009. Now that cancer has traveled (metastasized), it will return. The only way it will not return is if we kill every cell. The odds are not on our side given what has already happened.
If it returns before 6 months we would not repeat this treatment. If it returns after 6 months we could repeat the same treatment we have been doing. Question-does that mean if it comes back within 6 months there is nothing you can do for me? No, says Dr Crane, I have lots of options for you. sigh of relief!
I was hoping for extinction of this cancer. Telling God to kill it. He is my only hope, Funny how something like this really drives that home.
Now before everyone starts to lecture me about God and His Power, I am already down with that. I know I am in His great big Hands. It is His Call. I find peace there.
As a nurse I have heard advice given to heart patients for years. You better do this, You better do that or you will die.
I used to think that would be motivation enough. You know if I don't eat right and exercise, take all these drugs, etc I would die. So if that is not enough to motivate you perhaps nothing will.
When I was first diagnosed with metastasis someone encouraged me to charge up my credit cards(they obviously don't know Dave Ramsey!), and travel anywhere I want, do anything I want.
In reality, I have done pretty much what I wanted to do. I don't have a bucket list. Guess I kept my bucket maybe 1/3 empty. There is one place I really want to go that I have not been and that place is in the plan if God allows me. Guess that is not so bad a way to live.
I do tend to forget that I am not the only one going through this. Yeah I do get the lead in this production. But there are more players here. David, Michelle, Bill, Haley, Nick, Blake, Dustin, Jess, Mom, Dad, Donna, David, Lori and their respective families. And not to forget Dennis, Daryl, Dan, Denise and their families too. And not to forget Fresh Winds. I do not want it to always be about me when we get together to practice and Dan reminded me that they were dealing with this too.
Dustin met the holistic oncologist and asked him what the family could do to help me. Dr Sakko said "Community". The people around me. They are the ones who give energy. So forgive me if I lean on you or pull from you. Just continue to be there to provide a soft place to land. I know you will.
My prayer is of course for complete healing. I will continue to move toward a more healthy lifestyle. No sense in making it harder for God you know. If complete healing does not come, then my prayer is that God will make it easy and keep His loving arms all around me, comfort me and slide me right into the place He has prepared for me, and all who know Him.
continue to be my rock all of you. I love you all so much, diane #1
ps: Oh and don't forget the "purple" ladies of my Awaited choir from Crossroads.
I asked Dr Crane what his definition of remission was. When the cancer is not active. Not that the tumors are gone, but not active. He would say I am in remission now since tumors are responding and tumor markers are down. We will continue the full treatment plan. Six treatments are all that are indicated.
I asked what if the tumors are gone. We scan at the end of treatment, then 3 months later. What if the cancer does return. Remember Dr Crane fully admits he is not God. He says the next steps would depend on when the cancer returns. It will return. This is not a primary site. I had that already in June 2009. Now that cancer has traveled (metastasized), it will return. The only way it will not return is if we kill every cell. The odds are not on our side given what has already happened.
If it returns before 6 months we would not repeat this treatment. If it returns after 6 months we could repeat the same treatment we have been doing. Question-does that mean if it comes back within 6 months there is nothing you can do for me? No, says Dr Crane, I have lots of options for you. sigh of relief!
I was hoping for extinction of this cancer. Telling God to kill it. He is my only hope, Funny how something like this really drives that home.
Now before everyone starts to lecture me about God and His Power, I am already down with that. I know I am in His great big Hands. It is His Call. I find peace there.
As a nurse I have heard advice given to heart patients for years. You better do this, You better do that or you will die.
I used to think that would be motivation enough. You know if I don't eat right and exercise, take all these drugs, etc I would die. So if that is not enough to motivate you perhaps nothing will.
When I was first diagnosed with metastasis someone encouraged me to charge up my credit cards(they obviously don't know Dave Ramsey!), and travel anywhere I want, do anything I want.
In reality, I have done pretty much what I wanted to do. I don't have a bucket list. Guess I kept my bucket maybe 1/3 empty. There is one place I really want to go that I have not been and that place is in the plan if God allows me. Guess that is not so bad a way to live.
I do tend to forget that I am not the only one going through this. Yeah I do get the lead in this production. But there are more players here. David, Michelle, Bill, Haley, Nick, Blake, Dustin, Jess, Mom, Dad, Donna, David, Lori and their respective families. And not to forget Dennis, Daryl, Dan, Denise and their families too. And not to forget Fresh Winds. I do not want it to always be about me when we get together to practice and Dan reminded me that they were dealing with this too.
Dustin met the holistic oncologist and asked him what the family could do to help me. Dr Sakko said "Community". The people around me. They are the ones who give energy. So forgive me if I lean on you or pull from you. Just continue to be there to provide a soft place to land. I know you will.
My prayer is of course for complete healing. I will continue to move toward a more healthy lifestyle. No sense in making it harder for God you know. If complete healing does not come, then my prayer is that God will make it easy and keep His loving arms all around me, comfort me and slide me right into the place He has prepared for me, and all who know Him.
continue to be my rock all of you. I love you all so much, diane #1
ps: Oh and don't forget the "purple" ladies of my Awaited choir from Crossroads.
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