Adenocarcinoma late diagnosis

oldbeauty

EZLiving66 said:

I really had a hard time with

I really had a hard time with the chemo.  I think it was because I was overdosed.  Chemo is based on weight but I am super sensitive to medication (a quarter of a Percoset knocked me out). After the second one, they couldn't control the side effects. I was so week I could barely walk and the nausea was horrible. After the third one, my liver started to fail, I lost control of my bladder and bowels, my eyesight was effected, my finger and toenails fell off, my skin, especially on my left side, started to peal and I could only walk a few steps without falling. 

My GP thought I had a small stroke with some bleeding in my brain when my blood pressure went to 220/140.  The day before my fourth scheduled chemo, we stopped it.  My GP and I both believed another chemo could be fatal.  She pointed out to me that this chemo was preventative; not curative and it was HER job to keep me alive while my oncologist/gynecologist's job was to kill the cancer. I agreed with her 100%. 

That was two and a half years ago.  So far, knock on wood, the UPSC (Stage II, Grade 3) has not returned.  I still have severe neuropathy in my feet which is especially painful at night, my left foot still drops and I have trouble walking on uneven surfaces, my eyesight constantly changes (I've had to change glasses six times in the last couple of years) and my finger and toenails are only partially attached. On a lighter note, my left eyebrow never grew back while my right eyelashes keep growing and I have to trim them.  I had Carboplatin and Taxotere. The Taxotere is now known to affect hair regrowth.

But, I'm still alive!  I went through physical and occupational therapy.  I can read again and although I still have memory problems, it has gotten much better as time has gone by.  The other night, I walked almost half a mile without a walker or cane. I see an acupressurist every other week which has helped the neuropathy.  The feeling has come back in both my hands except for the index finger and thumb on my right hand but at least I can write and type again.  Prior to cancer, I took one pill a day - levothyroxine for my thyroid that I had taken since I was seven.  Now I take 14 (which is down from 18) every day.  

We sold our business last August and retired to Florida.  Just being able to relax and enjoy this beautiful weather has made life so much better.

Love,

Eldri

Acupressure

Hi Eldri, I am curious about the benefit you report from acupressure treatment for neuropathy.  I too still suffer from neuropathy in my feet.  I did gain benefit from time away from chemo and I did go thru twice a week physical therapy that focused on retraining my brain to interpret the defective signals from my feet to aid stability and balance and also core strength.  I take R Lipoic Acid and do my PT exercises every day.  I am on vacation now and need to use my hiking sticks for walking any distance.  I do massage once per week mainly for how good it feels.  But I don't really know what acupressure treatment means.  Can you educate us?  Thank you.  Best wishes, Oldbeauty

grace_of_god

Labs not ready

My post op appointment was dandy all the way through till we got to what the reports showed and they didn't have them.  Not in the system yet.  One hour twenty minutes each way to look at my incisions which are fine.   Deep sigh.  Scheduled again for next thursday to hear the news.  I couldn't believe it.  The sleepless night before and the stress of waiting to hear the important words.  Using all the techniques and activities to get my mind off it but it's very hard not to keep thinking about it.  I am 9 days post op and feeling fairly well.  I could tell the ride and walking for the appointment was a lot of pressure on the sore insides so today I rested.  Kind of achey now but not bad.  I wish all you ladies a wonderful Memorial Weekend.  I'll check back in when I finally learn what my results are! 

CheeseQueen57

grace_of_god said:

Labs not ready

My post op appointment was dandy all the way through till we got to what the reports showed and they didn't have them.  Not in the system yet.  One hour twenty minutes each way to look at my incisions which are fine.   Deep sigh.  Scheduled again for next thursday to hear the news.  I couldn't believe it.  The sleepless night before and the stress of waiting to hear the important words.  Using all the techniques and activities to get my mind off it but it's very hard not to keep thinking about it.  I am 9 days post op and feeling fairly well.  I could tell the ride and walking for the appointment was a lot of pressure on the sore insides so today I rested.  Kind of achey now but not bad.  I wish all you ladies a wonderful Memorial Weekend.  I'll check back in when I finally learn what my results are! 

That sucks

That’s awful that they didn’t have. Your pathology report. 

Northwoodsgirl

No results at post op visit

Oh no! All the anticipation and travel and no results? We all deserve better healthcare than that! It doesn’ t take pathology lab that long to analyze. They should not charge you for that visit. I am sorry you had to go through that. Try to enjoy the holiday weekend and not think too much about pathology report (lack of).  

Lori

Tamlen

Northwoodsgirl said:

No results at post op visit

Oh no! All the anticipation and travel and no results? We all deserve better healthcare than that! It doesn’ t take pathology lab that long to analyze. They should not charge you for that visit. I am sorry you had to go through that. Try to enjoy the holiday weekend and not think too much about pathology report (lack of).  

Lori

Darn right

I agree with Northwoodsgirl -- I would challenge getting charged for two visits on this. Shame on them for not alerting you the path report wasn't in.

grace_of_god

extra trip...

Ya I'm not happy about this follow up. The really baffling part is when I originally scheduled the appointment I was told the doctor had vacation next week so lets get you in friday.  Then I didn't even see him but his PA who I am now rescheduled with.  I'm not happy about the fact that my postsurgical discussion was and will not be with the actual surgeon.  I suppose I could tell them to schedule me with him on his return but it seems like that far out how will he even remember his impressions from my particular case.  This experience has been full of problems like this.  Kind of feels as if I can't depend on some of the basics going right.  Yikes.  The first doc I saw for pelvic, vaginal sonogram and endo biopsy was a old old guy who pushed me right over the edge.  When he called me with the biopsy results he proceeded to say "well your ultrasounds shows some thickening and what I want to do is a biopsy as soon as possible where I'll take..."  I cut in "what the H*!! kind of doctor are you?!  You already did that and you really hurt me."!  I couldn't believe it.  I never swore at a doctor before but you all know the stress of waiting to hear the words it is or it isn't cancer.  Now an elusive surgeon.  Do any of you take this process as a series of tests to see how much you can take while keeping it together and positive?

    

grace_of_god

Here we go!

2 weeks post surgery and I am feeling very well.   The first 5 days were hard mainly because of a lot of dry heaving but once that settled down I began to feel a lot better.  Only good part of the bad naseaue is I lost a few pounds which is always welcome for me.  The pain inside is much much better too!  I can really get around and get up or down from sitting or lying with little discomfort.  So later today in about 12 hours I go back to get the labs from surgery.  I'm praying for the "all clear"!  

EZLiving66

grace_of_god said:

Here we go!

2 weeks post surgery and I am feeling very well.   The first 5 days were hard mainly because of a lot of dry heaving but once that settled down I began to feel a lot better.  Only good part of the bad naseaue is I lost a few pounds which is always welcome for me.  The pain inside is much much better too!  I can really get around and get up or down from sitting or lying with little discomfort.  So later today in about 12 hours I go back to get the labs from surgery.  I'm praying for the "all clear"!  

I sure am hoping for that

I sure am hoping for that "all clear" too!!

Please let us know what happens.

Love,

Eldri

grace_of_god

EZLiving66 said:

I sure am hoping for that

I sure am hoping for that "all clear" too!!

Please let us know what happens.

Love,

Eldri

All clear!

I must have extra good prayer warriors on my side because I heard the miraculous words that I was as good as it gets!  Stage 1 Grade 1 no need for any treatment just a 3 month visit for two years etc.  The feeling is amazing and I feel like about the luckiest person on the planet.  The seriousness of my "brush" with cancer will stay with me always.  It has been, without a doubt,  the scariest thing I've ever been through!  I want to reach out and hug you all who are still on that tightrope walk.  What I learned from the shared info and support here is that you all are really, really brave! 

LisaPizza

grace_of_god said:

All clear!

I must have extra good prayer warriors on my side because I heard the miraculous words that I was as good as it gets!  Stage 1 Grade 1 no need for any treatment just a 3 month visit for two years etc.  The feeling is amazing and I feel like about the luckiest person on the planet.  The seriousness of my "brush" with cancer will stay with me always.  It has been, without a doubt,  the scariest thing I've ever been through!  I want to reach out and hug you all who are still on that tightrope walk.  What I learned from the shared info and support here is that you all are really, really brave! 

YAAAAAYYYYYYY!

YAAAAAYYYYYYY!

MugsBugs

grace_of_god said:

All clear!

I must have extra good prayer warriors on my side because I heard the miraculous words that I was as good as it gets!  Stage 1 Grade 1 no need for any treatment just a 3 month visit for two years etc.  The feeling is amazing and I feel like about the luckiest person on the planet.  The seriousness of my "brush" with cancer will stay with me always.  It has been, without a doubt,  the scariest thing I've ever been through!  I want to reach out and hug you all who are still on that tightrope walk.  What I learned from the shared info and support here is that you all are really, really brave! 

Fantastic!

I am so happy for you!  The best outcome ever!  i am praying your recovery goes well!  

 

 

 

 

Jairoldi

Terrific!

What welcome news to hear. 

Harmony09

WoooooHoooo!

I'm REALLY happy for you grace_of_god! What wonderful news! I hope you continue to heal well

grace_of_god

Thanks Lisa!  still seems

Thanks Lisa!  still seems like a dream and as if I was on trial and got set free.  I have had some incontinence of urine which is like only a nuisance at this point.  I understand it's not uncommon and things are still settling down. (2 1/2 weeks post op now)  I'm going to see how it is as I continue to heal.  Although I am in the clear I just can't exit stage left from here.  It's my intention to pop in and read and pray for folks from time to time.  I'm pretty much in awe of how well I see people dealing with the illness and uncertainty.  My heart sends love  and encouragement to you all. If you ever have a special prayer request just let me know... I have lots of peeps who like to pray!   

grace_of_god

MugsBugs said:

Fantastic!

I am so happy for you!  The best outcome ever!  i am praying your recovery goes well!  

 

 

 

 

Thanks Mugs!

Don't know how I got so lucky but I'm very very thankful for it!

grace_of_god

Jairoldi said:

Terrific!

What welcome news to hear. 

Thanks Jeroldi ...this sure

Thanks Jeroldi ...this sure has given me a humble heart and I hope to never take it for granted.  

grace_of_god

Harmony09 said:

WoooooHoooo!

I'm REALLY happy for you grace_of_god! What wonderful news! I hope you continue to heal well

Thanks Harmony!

I guess I'm feeling a little guilty ...like survivor's guilt when I see all you lovely ladies in the battle.  But I know that's bad thinking and I just need to be grateful.  And I will be hopeful that you all get great news too at whatever point.  Hugs!

grace_of_god

Sepsis

After being sick off and on post surgery (I am a month out) I returned to the ER 2 days ago with vomiting, alternating sweats and chills, abdominal pain and what had become a foul vaginal discharge.  Quickly learned through CT and all indications that I was septic, white cell count 18,000 plus.  I was told I have many abcesses throughout my insides.  I was admitted, put on IV antibiotics and so far am responding well to what they are giving me.  But I am in a lot of fear as they've explained they will be putting a catheter inserted through the belly skin into the inner abdomen to drain the abcess(s).  I understand this is the best approach to treat this problem.  However, they are doing it with me awake with a local.  I'm terrified.  My pain receptions are off the charts (I have fibromyalgis) and with all the difficult physical and emotional demands (I am also MH) I'm a cowardly crybaby at this point.  I've been crying about this and docs still says a xanax before and a skin local is it.  I haven't met the radiologist specist who will do this but tomorrow I'm going to tell him where I'm at in fear and that I've read about the procedure online being done with or without sedation.  I want to have it done but am terrified of a repeat horror show like I had a few months back having an endometrial biopsy.  No anesthtic but did have a xanax before.  I was terrified but determined and bravely got situated on the table that day.  I was coaching myself... relax, breathe, breathe.  I could feel the catheter going through my cervix and was nicely surprised it didn't hurt a bit when BAM it was like all the stars exploded and I was screaming uncontrollably.  I almost broke one of the stirrups and was automatically tucking into a fetal position and sliding off the table with the speculum still in me.  Unreal.  The doctor disappeared and the nurse was quiet.  Nothing was really said except he thought the sample looked normal not to worry.  It wasn't.  So here comes another tube being thrust into an inner area that is abcessed and already hurting.  I won't let them do it to me awake I just can't face it.  So I fight this battle again tomorrow.

 

Armywife

EZLiving66 said:

I really had a hard time with

I really had a hard time with the chemo.  I think it was because I was overdosed.  Chemo is based on weight but I am super sensitive to medication (a quarter of a Percoset knocked me out). After the second one, they couldn't control the side effects. I was so week I could barely walk and the nausea was horrible. After the third one, my liver started to fail, I lost control of my bladder and bowels, my eyesight was effected, my finger and toenails fell off, my skin, especially on my left side, started to peal and I could only walk a few steps without falling. 

My GP thought I had a small stroke with some bleeding in my brain when my blood pressure went to 220/140.  The day before my fourth scheduled chemo, we stopped it.  My GP and I both believed another chemo could be fatal.  She pointed out to me that this chemo was preventative; not curative and it was HER job to keep me alive while my oncologist/gynecologist's job was to kill the cancer. I agreed with her 100%. 

That was two and a half years ago.  So far, knock on wood, the UPSC (Stage II, Grade 3) has not returned.  I still have severe neuropathy in my feet which is especially painful at night, my left foot still drops and I have trouble walking on uneven surfaces, my eyesight constantly changes (I've had to change glasses six times in the last couple of years) and my finger and toenails are only partially attached. On a lighter note, my left eyebrow never grew back while my right eyelashes keep growing and I have to trim them.  I had Carboplatin and Taxotere. The Taxotere is now known to affect hair regrowth.

But, I'm still alive!  I went through physical and occupational therapy.  I can read again and although I still have memory problems, it has gotten much better as time has gone by.  The other night, I walked almost half a mile without a walker or cane. I see an acupressurist every other week which has helped the neuropathy.  The feeling has come back in both my hands except for the index finger and thumb on my right hand but at least I can write and type again.  Prior to cancer, I took one pill a day - levothyroxine for my thyroid that I had taken since I was seven.  Now I take 14 (which is down from 18) every day.  

We sold our business last August and retired to Florida.  Just being able to relax and enjoy this beautiful weather has made life so much better.

Love,

Eldri

Oh, Eldri!

I am just reading this harrowing detail of your chemo experience with the two drugs I had also.  Bless you!  You are truly a warrior!!!

Armywife

grace_of_god said:

Sepsis

After being sick off and on post surgery (I am a month out) I returned to the ER 2 days ago with vomiting, alternating sweats and chills, abdominal pain and what had become a foul vaginal discharge.  Quickly learned through CT and all indications that I was septic, white cell count 18,000 plus.  I was told I have many abcesses throughout my insides.  I was admitted, put on IV antibiotics and so far am responding well to what they are giving me.  But I am in a lot of fear as they've explained they will be putting a catheter inserted through the belly skin into the inner abdomen to drain the abcess(s).  I understand this is the best approach to treat this problem.  However, they are doing it with me awake with a local.  I'm terrified.  My pain receptions are off the charts (I have fibromyalgis) and with all the difficult physical and emotional demands (I am also MH) I'm a cowardly crybaby at this point.  I've been crying about this and docs still says a xanax before and a skin local is it.  I haven't met the radiologist specist who will do this but tomorrow I'm going to tell him where I'm at in fear and that I've read about the procedure online being done with or without sedation.  I want to have it done but am terrified of a repeat horror show like I had a few months back having an endometrial biopsy.  No anesthtic but did have a xanax before.  I was terrified but determined and bravely got situated on the table that day.  I was coaching myself... relax, breathe, breathe.  I could feel the catheter going through my cervix and was nicely surprised it didn't hurt a bit when BAM it was like all the stars exploded and I was screaming uncontrollably.  I almost broke one of the stirrups and was automatically tucking into a fetal position and sliding off the table with the speculum still in me.  Unreal.  The doctor disappeared and the nurse was quiet.  Nothing was really said except he thought the sample looked normal not to worry.  It wasn't.  So here comes another tube being thrust into an inner area that is abcessed and already hurting.  I won't let them do it to me awake I just can't face it.  So I fight this battle again tomorrow.

 

Just saw this

I'm sure this has already happened, but I just had to ask if they would give you Versed - you won't remember a thing but it's not general anesthesia.  I hope it went ok - you have been through a lot.