Carol (CAMUL) .. How are You doing ??

Hi Carol,

You are on my mind often, sorry I do not write to you. Seems like Halaven is tough for me. Hugs

aisling8 said:

Yes, thinking about you

Maybe you're off fishing with your boys? Though it might be too soon and still cold.

Just check in when you can. We worry:)

xoxo

Victoria

What's going on?

Suzanne

Am I black mailed?  Looks like this may work.  I was in E.R. a couple of weeks ago. Whole body cramping from abdomen thru chest.  They ran some tests. Said no clot s, heart good but have an infection.  No UTI, no sore throat...  Let me go home in am.  Went to dentist for scheduled appt.  New dentist, I was still filling out medical questions.  He did an xray. Thought I had a toothache.  

It was an infection.  His first comment was.."were you on phosphates?"  Your jaw has necrosis.  I need to pull a tooth where I had a root canal and the cap dropped out.  From the effects of Xgeva, which was stopped when my jaw started hurting in March 2013,  my jaw bone has died and is soft.  Most of my teeth are loose and hurt when I chew.  He talked to my onco.  He said when he pulls what is left of the tooth and the posts from the root canal, there use a 50/50 chance that my jaw could crumble or fracture.  I just finished an antibiotic and have an appointment at the University Hospital dental school for Friday.  Then if it cracks or crumbles he will had medical staff nearby!

I saw my onco few days later, he said the tooth needs to come out.  I risk a bone and/or blood infection if I do nothing.  I have no dental insurance. Asked if they graft w/bone if that happens.  He said they can't use my bone from rib etc. Bcuz of the tumors.  So, I may postpone the appointment for another couple of weeks and see my own dentist.  The one I saw teaches at the dental school.

At onco appointment, everything was the same except that my tumor.markers are.going in the wrong direction.  I am back  in the 30's and climbing, but still slower than if not on Aromason.  All-in-all, not such a good month.  Did the sleep study.  I have not heard back and it is over 2 weeks out.  Onco read the scan results and said I stopped 18 times in 2 1/2 hours when my oxygen levels dropped.  They put me on oxygen after 2 1/2 hours and I didn't stop once, and my levels stayed steady at 98/99 %.  He said cpap machine not necessary!  So I am cxl the next visit.  Medicare required the test to keep me on the oxygen.

I didn't post as I was a bit down.  I just hate going to Dr. Appts.  I knew when he said stable 2 month as ago (from the Month b4), that it was no longer right as I could feel new lumps in right arm and left leg, and now one by left elbow.  But he was so excited that I didn't show him til last month.  He felt it and said not fatty tumors, but soft tissue tumors.. they cleared on chemo in back and torso while on chemo.

It has been 2 years now since chemo and everything was stopped.  He said I am now seeing the fallout from the treatments.  Ie.  Bladder lining w/burned and damaged veins, diverticulitis, both from rad s to pelvic.  Necrosis in right hip and jaw, from the Xgeva, and the neuropathy from chemo.  

I knew there would be some fallout from rads and chemo, he said I am his first patient with jaw necrosis that is causing real issues.  I asked if this is bcuz I lived longer than expected, his wanderer e was they really didn't know what the long-term effects of the Xgeva could be, and people with aggressive cancers are living longer bcuz of these new treatments, and they are starting to see the effects.

SO! I am very fortunate to have been given the drugs as I am still here, therefore, my new task at hand is learning how to live with the fallout, and at the same time establishing quality of life (less pain and still be mentally present), controlling the stress that goes with constant pain, as well as the bills that accompany 5 years of aggressive, continual, treatment.  He said he is beginning to see these issues more and more, and the financial distress mainly on single females who had good jobs while working (bcuz SSDI and work disability ins. Tends to be higher than the cutoffs for any kind of financial assistance or programs.  Most males will remarry if they are widowed or divorced tend to remarry and have primary insurance rather than SSDI.  Usually primary ins covers better than SSDI.  

So.  I am working really hard at trying to stay positive and do what I can on good days!  My pain Dr. asked me if I found.my new normal.  I LAUGHED and said, there is no normal at this point.  The most normal thing I know is that if I do something at all physical today, I will most likely be too sore to move for the next 2 days, so it is really important when I make a commitment that it is something I really want to do!  

She smiled and said it is not going to get better, so this is my new normal! I just smiled!  I think I figured that out already!

Hope everyone is doing well!  Hope this goes thru!   have not been able to post!

VICTORIA,  In my onco office!  A man made the birds origami, like yours, but the first 12 on each one was done with foiled papers!  Then an additional 10 smaller out of paper, and 4 smaller again.  He has them in a circle 3 deep and almost to the floor.  There are 3 circles of wire with the birds on each from there to the top there is another circle of heavy wire (almost like a hanger wire), the crystals strung through the top.  He put a Edison lightbulb in a mason jar in the middle of the foiled paper part.  IT is beautiful!  He called it 1000 hours of hope! It was part of his estate.  He beat the cancer and died in his late 80's of natural causes...  Made me think of you when I saw it.  There were exactly1000 birds on it. It throws a beautiful light thru the reception room at the office.

Hugs,

Carol

camul said:

can't send messages

Am I black mailed?  Looks like this may work.  I was in E.R. a couple of weeks ago. Whole body cramping from abdomen thru chest.  They ran some tests. Said no clot s, heart good but have an infection.  No UTI, no sore throat...  Let me go home in am.  Went to dentist for scheduled appt.  New dentist, I was still filling out medical questions.  He did an xray. Thought I had a toothache.  

It was an infection.  His first comment was.."were you on phosphates?"  Your jaw has necrosis.  I need to pull a tooth where I had a root canal and the cap dropped out.  From the effects of Xgeva, which was stopped when my jaw started hurting in March 2013,  my jaw bone has died and is soft.  Most of my teeth are loose and hurt when I chew.  He talked to my onco.  He said when he pulls what is left of the tooth and the posts from the root canal, there use a 50/50 chance that my jaw could crumble or fracture.  I just finished an antibiotic and have an appointment at the University Hospital dental school for Friday.  Then if it cracks or crumbles he will had medical staff nearby!

I saw my onco few days later, he said the tooth needs to come out.  I risk a bone and/or blood infection if I do nothing.  I have no dental insurance. Asked if they graft w/bone if that happens.  He said they can't use my bone from rib etc. Bcuz of the tumors.  So, I may postpone the appointment for another couple of weeks and see my own dentist.  The one I saw teaches at the dental school.

At onco appointment, everything was the same except that my tumor.markers are.going in the wrong direction.  I am back  in the 30's and climbing, but still slower than if not on Aromason.  All-in-all, not such a good month.  Did the sleep study.  I have not heard back and it is over 2 weeks out.  Onco read the scan results and said I stopped 18 times in 2 1/2 hours when my oxygen levels dropped.  They put me on oxygen after 2 1/2 hours and I didn't stop once, and my levels stayed steady at 98/99 %.  He said cpap machine not necessary!  So I am cxl the next visit.  Medicare required the test to keep me on the oxygen.

I didn't post as I was a bit down.  I just hate going to Dr. Appts.  I knew when he said stable 2 month as ago (from the Month b4), that it was no longer right as I could feel new lumps in right arm and left leg, and now one by left elbow.  But he was so excited that I didn't show him til last month.  He felt it and said not fatty tumors, but soft tissue tumors.. they cleared on chemo in back and torso while on chemo.

It has been 2 years now since chemo and everything was stopped.  He said I am now seeing the fallout from the treatments.  Ie.  Bladder lining w/burned and damaged veins, diverticulitis, both from rad s to pelvic.  Necrosis in right hip and jaw, from the Xgeva, and the neuropathy from chemo.  

I knew there would be some fallout from rads and chemo, he said I am his first patient with jaw necrosis that is causing real issues.  I asked if this is bcuz I lived longer than expected, his wanderer e was they really didn't know what the long-term effects of the Xgeva could be, and people with aggressive cancers are living longer bcuz of these new treatments, and they are starting to see the effects.

SO! I am very fortunate to have been given the drugs as I am still here, therefore, my new task at hand is learning how to live with the fallout, and at the same time establishing quality of life (less pain and still be mentally present), controlling the stress that goes with constant pain, as well as the bills that accompany 5 years of aggressive, continual, treatment.  He said he is beginning to see these issues more and more, and the financial distress mainly on single females who had good jobs while working (bcuz SSDI and work disability ins. Tends to be higher than the cutoffs for any kind of financial assistance or programs.  Most males will remarry if they are widowed or divorced tend to remarry and have primary insurance rather than SSDI.  Usually primary ins covers better than SSDI.  

So.  I am working really hard at trying to stay positive and do what I can on good days!  My pain Dr. asked me if I found.my new normal.  I LAUGHED and said, there is no normal at this point.  The most normal thing I know is that if I do something at all physical today, I will most likely be too sore to move for the next 2 days, so it is really important when I make a commitment that it is something I really want to do!  

She smiled and said it is not going to get better, so this is my new normal! I just smiled!  I think I figured that out already!

Hope everyone is doing well!  Hope this goes thru!   have not been able to post!

VICTORIA,  In my onco office!  A man made the birds origami, like yours, but the first 12 on each one was done with foiled papers!  Then an additional 10 smaller out of paper, and 4 smaller again.  He has them in a circle 3 deep and almost to the floor.  There are 3 circles of wire with the birds on each from there to the top there is another circle of heavy wire (almost like a hanger wire), the crystals strung through the top.  He put a Edison lightbulb in a mason jar in the middle of the foiled paper part.  IT is beautiful!  He called it 1000 hours of hope! It was part of his estate.  He beat the cancer and died in his late 80's of natural causes...  Made me think of you when I saw it.  There were exactly1000 birds on it. It throws a beautiful light thru the reception room at the office.

Hugs,

Carol

Sending big hugs and kisses!  Think about you often.

xoxo,

Jean

Oh my, Carol, reading what's going on with you, it's so much and sounds overwhelming. It makes me want to come to your house and make you some soup, not that I know how to make good soup, but something comforting, something -- oh, wait, that would be a margarita:)

You've outlived the studies and here you are with real needs and real problems and nothing's easy. I hate that money and insurance get thrown into the mix to complicate things. I hate that it's all happening to you. I hate that there's no quick fix like take this pill and it will all be better. 

Thank you for describing the cranes in your oncologist's office. I'm trying to picture it all. It sounds like he made what artists call an installation, not just some cranes hanging on strings. If I'm picturing what you're describing, the light hits the ones made of foil and the light hits the crystals up top. I'm going to try some foil, see what happens. What I'm imagining is beautiful!!

Sending you a big hug. No margarita cause it's probably not good for you. 

xoxo

Victoria

GlowMore said:

You are...

You Carol are ONE FANTASTIC WOMAN.........  I feel humbled and proud to be on the same board with you. 

Prayers ..  and Love  ..  Glo

Double Whammy said:

Well, there you are!

Doesn't sound like the best of times for you - again.  So sorry to hear about all the fallout you're experiencing.  I guess fallout is the best word for all the treatments you've had, my friend.  I think about you often.

Hugs,

Suzanne

I want a margarita, Victoria.  Let's have one for Carol.  Oh, she'll probably have one with us!

 

I will have one with you! We will need to start about noon thou, so it does not affect my breathing when I go to sleep! Vctoria, it is reall beautiful, and it is the foils and crystals reflecting! Felt like I should have been doing cards or getting a reading. What you would see in a Woo Woo store.

Carol

You sure have been put thru the wringer. I hope that all goes well for your dental procedure. I understand your feeling of dealing with insurance issues, it makes me furious that we have to fight for coverage when through no fault of our own have been dealt a serious illness. I'm off the soap box now and I am sending you a huge hug . Love surf

VickiSam said:

Carol .. like it has been stated, so humbled

to be in your Company.  I don't have the words .. Humbling to KNOW YOU... frustrated to see you dealing with so much. The intense stress you are under daily, and unimaginable pain you must be in.

I do know that I keep you close to my heart, and in prayers daily. 

Gentle hugs and magic sprinkles I send to YOU, Carol.

 

Vicki Sam