Cancer Support and Caregivers Who Are Trail Blazers!

[pynkkameleon]

I have seen a marked reduction in memory and other issues as well. Chemo ended for me in May 2010. I find myself often pausing mid-sentence trying to remember words and even losing track of what the conversation was about. Reading books is difficult for me as I now have trouble retaining what I have read. I also have always loved to write. It may be one of my greatest struggles now.

I believe that the chemo played a big part in these issues. I also believe that the multitude of surgeries (anesthesia), medications, possibly radiation and who knows what else plays a part too.

I had one doctor try to tell me that it wasn't the chemo but was instead a sign that I was getting older. Seriously? Asshole!

My insurance covers visits to a cognitive therapist. I see her once a week and have for almost a year now. She's been a wonderful source of support for me. We work on keeping my brain busy by doing a lot of puzzles, word problems, memory quizzes and she gives me the tips that I need to remember things at home. Post-it notes, calendars, white boards, a voice recorder to take to appointments and more are all a part of my daily life now. They really are a huge help. While she doesn't believe that I will regain that 15% or so of memory/cognitive function that I have lost, she has at least given me some great new skills to help me to cope and deal with it.

I think that depression also plays a part in my life just as Jean said. For me it isn't the stereotypical depression. I still laugh with wild abandon every chance that I can. I find joy in every nook and cranny available. I still live as if my glass is overflowing. It's the anxieties and fears that never existed before. I don't have the self confidence that I used to. I don't have the energy to do the things that I want to do. It's very frustrating.

I know that I am not a textbook case. Lots of people don't even experience half of what I or many of us have. Even if we are given the "same" chemo, for the "same" cancer, for the "same" length of time, every one of us is going to have a different reaction to it because we ARE each different. What I find to be the most irritating is when our own doctors feed us these lines and statistics, giving us a time frame for when everything should stop affecting us. They know better. The hard truth is that every reaction and length of that reaction is going to vary from person to person and even with all of the studies they do, nobody really knows much of anything about chemo and its long range effects.

I'll add that my chemo was for Breast Cancer, Invasive Ductal Carcinoma, 2.5cm tumor with lymph node involvement. ER/PR+, Her2 -. I did 4 rounds of Taxotere and Cytoxan, 3 weeks apart followed by radiation and what now looks to be a total of 10 years of oral tamoxifen thanks to new guidelines that just came out. I also have had a double mastectomy with several failed attempts at reconstruction and have no desire to ever attempt it again. Not only do I save money by not indulging in my old obsession over buying sexy lingerie but I also don't have to worry about boobies someday sagging down to my toes and tripping me. Double win on that one!

A friend recently asked me if I would do it all over again if I knew then what I know now. My answer? Hell yes I would do it again. I still believe that it saved my life and I have a LOT of living and hell raising left to do. I just hit my 3 year surgery anniversary date and so far so good, no sign of mets or recurrence. YAY!

Anyway, Since I clearly am suffering from insomnia tonight and Christmas is tomorrow I am going to scoot my butt off of here and go wrap presents. I am such a procrastinator!

You are all amazing! Sending each of you big hugs, lots of love and warm thoughts for the holidays!!

..goodlilfemme ~ I'll be keeping you, your bestie and your dad in my thoughts and prayers.

[DapperButch]

Originally Posted by mustangjeano

Yes, twice. Thanks for remembering Dapper. My chemo was in 2004 and the initial memory and focus problems are much better but the most challenging side effect was/is depression. I never had a problem with depression before chemo and it has not improved much in all these years---I have tried several Rxs and done a lot of mental work on my own but it continues to be something that dogs me. I believe the chemo and/or three major cancer surgeries did a number on my brain chemistry.

Thanks for answering, Jean. I believe that I have read somewhere that a long term effect of chemo can be depression. I suppose what I would think about in that case is if at least part of the depression is about going through cancer itself? Left over feelings about going through all of it and fears about the future? I know my fear of getting it again is very present and I feel like shit about myself if I am not eating in the way that I believe will keep cancer at bay (seagan =vegan+fish).

Does anyone else get flashbacks of your surgeries/chemo time period?

Every once in a while I will get a flash of either events surrounding the chemo itself, the time period, etc. The other day out of the blue, I all of a sudden "felt" the pressure of the nurse attaching the chemo tubing to my no-longer-there chemo port.

I can't have the ceiling fan on in the bedroom as my surgery was in the summer and I had it on all the time. If it is on, I flash back to the how I felt (physically and emotionally) as I was healing in that bed.

I also can get memories of things I completely forgot about related to my surgeries or chemo. They are things that I knew happened, but I didn't remember them for some reason. It is sort of hard to explain...how it is like you "remembered" it for the first time, even though if someone asked you if a particular thing happened, it is not like you wouldn't remember it.

The other day I was at my work's Holiday party. There was a couple of us there discussing wine and what we like. As I was launching into the reason that although I love beer, I try to mainly drink red wine (anything besides red wine could increase chance of recurrence), I turned to one of the people there and said, "I think you know I had cancer...", as an intro to what I was about to say. This woman is a part of our department, but I don't see her very frequently as she works in another area of the hospital. However, she is in our office for a few hours a week seeing outpatient clients.

In my head it was possible that she was unaware that I had cancer in the past. This is crazy. Let me tell you why....

This is the person whose office I stumbled into with a dripping chemo bag in my hand (I had a chemo pump for 48 hours every other week), after it had dropped to the floor and busted while I was in the bathroom. I didn't remember this. How crazy is that? How did I forget dropping a chemo bag that is attached to my chest...the chemo then pouring down my hand as I hold the bag away from my body...all the while sneaking out of the bathroom trying to hide this bag in my hand from the vision of my next client who is sitting in the waiting room? So, I saunter into this woman's office, shirt untucked with this chemo tubing coming out from the bottom of the shirt, with a dripping bag, place it in her trash can (still attached to my chest with tubing, of course), and ask for help. How does one forget this? I mean, I didn't forget it, I just hadn't thought of it since this happened. Anyone else ever experience moments of "forgetting" something? The infection control people come in to wipe down offices for crying out loud! How does one "block" this? lol

At the time of the wine discussion the woman just nodded and indicated she knew that I had had cancer. Next time I see her I will have to explain!

[deb_U_taunt]

Dapper,

Hmmm 5 FUs sounds appropriate for any cancer lol

Cyclophosphamide/Adriamycin every two weeks 4 times (this one I didn't have too many side effects from, hair loss and the steroid moon face was about it)
Taxol every two weeks 4 times (this is the one that kicked my ass)

Skipping words!!! YES. Its hurt my career, since I don't retain things like I used to. I can't work the hours that most IT people work anymore either. I went from 60 hours on average to 40 now.

Hugs, Deb

Originally Posted by DapperButch

Hi, deb.

Yes, the chemo fog has been quite hard for me as well, and my 6 months of chemo ended in 3/2011. The worst for me is word finding. It has become a bit better, but is still an ongoing, daily problem. I also seem to skip words when writing, or write the wrong word.

Additionally, although it has gotten better, immediate memory is a problem. Three or four sentences into a paragraph, I can't remember what the first and second sentence said. I had actually planned to return to graduate school for an additional degree, but wasn't able to get through the GRE due to the above problem. It is better, but since it has been so long, I don't know if it will become good enough to be able to return to school.

Evidently, the biggest reduction in chemo fog happens in the first year. After this, it either leaves much more slowly or doesn't get any better.

What type of chemo did you get? I received 5FU for colon cancer.

[deb_U_taunt]

HUGS Jeano

Depression here too I never had problems with it before either. Happy go lucky kinda gal, but I get in a funk now. I have been isolating more and more and I know that is NOT good.

Originally Posted by mustangjeano

Yes, twice. Thanks for remembering Dapper. My chemo was in 2004 and the initial memory and focus problems are much better but the most challenging side effect was/is depression. I never had a problem with depression before chemo and it has not improved much in all these years---I have tried several Rxs and done a lot of mental work on my own but it continues to be something that dogs me. I believe the chemo and/or three major cancer surgeries did a number on my brain chemistry.

[deb_U_taunt]

Made sense to me, made me cry knowing I am not the only one.

Originally Posted by DapperButch

Thanks for answering, Jean. I believe that I have read somewhere that a long term effect of chemo can be depression. I suppose what I would think about in that case is if at least part of the depression is about going through cancer itself? Left over feelings about going through all of it and fears about the future? I know my fear of getting it again is very present and I feel like shit about myself if I am not eating in the way that I believe will keep cancer at bay (seagan =vegan+fish).

Does anyone else get flashbacks of your surgeries/chemo time period?

Every once in a while I will get a flash of either events surrounding the chemo itself, the time period, etc. The other day out of the blue, I all of a sudden "felt" the pressure of the nurse attaching the chemo tubing to my no-longer-there chemo port.

I can't have the ceiling fan on in the bedroom as my surgery was in the summer and I had it on all the time. If it is on, I flash back to the how I felt (physically and emotionally) as I was healing in that bed.

I also can get memories of things I completely forgot about related to my surgeries or chemo. They are things that I knew happened, but I didn't remember them for some reason. It is sort of hard to explain...how it is like you "remembered" it for the first time, even though if someone asked you if a particular thing happened, it is not like you wouldn't remember it.

The other day I was at my work's Holiday party. There was a couple of us there discussing wine and what we like. As I was launching into the reason that although I love beer, I try to mainly drink red wine (anything besides red wine could increase chance of recurrence), I turned to one of the people there and said, "I think you know I had cancer...", as an intro to what I was about to say. This woman is a part of our department, but I don't see her very frequently as she works in another area of the hospital. However, she is in our office for a few hours a week seeing outpatient clients.

In my head it was possible that she was unaware that I had cancer in the past. This is crazy. Let me tell you why....

This is the person whose office I stumbled into with a dripping chemo bag in my hand (I had a chemo pump for 48 hours every other week), after it had dropped to the floor and busted while I was in the bathroom. I didn't remember this. How crazy is that? How did I forget dropping a chemo bag that is attached to my chest...the chemo then pouring down my hand as I hold the bag away from my body...all the while sneaking out of the bathroom trying to hide this bag in my hand from the vision of my next client who is sitting in the waiting room? So, I saunter into this woman's office, shirt untucked with this chemo tubing coming out from the bottom of the shirt, with a dripping bag, place it in her trash can (still attached to my chest with tubing, of course), and ask for help. How does one forget this? I mean, I didn't forget it, I just hadn't thought of it since this happened. Anyone else ever experience moments of "forgetting" something? The infection control people come in to wipe down offices for crying out loud! How does one "block" this? lol

At the time of the wine discussion the woman just nodded and indicated she knew that I had had cancer. Next time I see her I will have to explain!

[DapperButch]

Originally Posted by deb_U_taunt

Dapper,

Hmmm 5 FUs sounds appropriate for any cancer lol

Cyclophosphamide/Adriamycin every two weeks 4 times (this one I didn't have too many side effects from, hair loss and the steroid moon face was about it)
Taxol every two weeks 4 times (this is the one that kicked my ass)

Skipping words!!! YES. Its hurt my career, since I don't retain things like I used to. I can't work the hours that most IT people work anymore either. I went from 60 hours on average to 40 now.

Hugs, Deb

Yes, mine was 12 times, every other week, for 6 months. I would have a 4 hour infusion, and then I wore a chemo pump for 48 hours. I would do my chemo on a Wednesday morning, get the pump on, go back to get pump removed on Friday afternoon and then crash for the entire weekend (evidently, it is common to get tired AFTER the chemo finishes, not during). I worked full time the whole way through, which really was probably dumb. I won't do that again, if it comes back. I started not working the afternoons of the infusions, however, because the steroids made me so agitated I would be irritable with my coworkers (fortunately, only the ones I was close too). So, at some point I just started taking those Wednesdays off.

pynnkameleon, I loved your post and have a lot to say, but will have to get to it later.

[clay]

[deb_U_taunt]

Originally Posted by DapperButch

Yes, mine was 12 times, every other week, for 6 months. I would have a 4 hour infusion, and then I wore a chemo pump for 48 hours. I would do my chemo on a Wednesday morning, get the pump on, go back to get pump removed on Friday afternoon and then crash for the entire weekend (evidently, it is common to get tired AFTER the chemo finishes, not during). I worked full time the whole way through, which really was probably dumb. I won't do that again, if it comes back. I started not working the afternoons of the infusions, however, because the steroids made me so agitated I would be irritable with my coworkers (fortunately, only the ones I was close too). So, at some point I just started taking those Wednesdays off.

pynnkameleon, I loved your post and have a lot to say, but will have to get to it later.

I worked through it too. I would get chemo Friday and have the weekend for rest. I was back at work Monday, until I started the Taxol and then after chemo Friday, I would work from home Monday and Tuesday.
I agree, I wouldn't do it again. BUT, it kept my mind on other things, too.

[julieisafemme]

My Mom is on hospice now. The cancer is in her lungs, spine, brain and liver. She just finished a 10 day course of palliative radiation. It did help. She is on all kinds of medication now. She also forgets words and has neuropathy from the chemo. She is 74! The doctor did not attribute it to old age! The lesion in her brain was causing headaches and slurred speech and that has improved with the radiation and steroids. Sorry to be a downer here! We have to be with her 24/7 now and sometimes she gets annoyed at allllll these people up in her business! She really enjoyed Christmas though.

[DapperButch]

Originally Posted by julieisafemme

My Mom is on hospice now. The cancer is in her lungs, spine, brain and liver. She just finished a 10 day course of palliative radiation. It did help. She is on all kinds of medication now. She also forgets words and has neuropathy from the chemo. She is 74! The doctor did not attribute it to old age! The lesion in her brain was causing headaches and slurred speech and that has improved with the radiation and steroids. Sorry to be a downer here! We have to be with her 24/7 now and sometimes she gets annoyed at allllll these people up in her business! She really enjoyed Christmas though.

Hi, Julie. You are not a downer. I have wondered how your mother is doing. We want you here in the thread!

Glad to hear she enjoyed Christmas. I hope the New Year is happy for her, as well.

Take care.

[clay]

Originally Posted by julieisafemme

My Mom is on hospice now. The cancer is in her lungs, spine, brain and liver. She just finished a 10 day course of palliative radiation. It did help. She is on all kinds of medication now. She also forgets words and has neuropathy from the chemo. She is 74! The doctor did not attribute it to old age! The lesion in her brain was causing headaches and slurred speech and that has improved with the radiation and steroids. Sorry to be a downer here! We have to be with her 24/7 now and sometimes she gets annoyed at allllll these people up in her business! She really enjoyed Christmas though.

Hi Julieisafemme:
You most definitley belong in this thread..always. We are here for you...and I wish you and your mom, and your family, comfort and peace during this time. That is great she had a good Christmas...and I send you comforting energies and healing energies to your mom.
Know you have the love & support of all of us here...we are here for you always....hugs to each of you....Clay

[Novelafemme]

{{{{Julie}}}} Both you and your mom are in my thoughts. Sending you as much love and support as I possibly can.

[deb_U_taunt]

You are not a downer. Does sound like the situation is. I lost my grandma to cancer Jan 1 this year. She wanted to see 2012.
You and yours will be in my prayers and thoughts.
Hugs to you

Originally Posted by julieisafemme

My Mom is on hospice now. The cancer is in her lungs, spine, brain and liver. She just finished a 10 day course of palliative radiation. It did help. She is on all kinds of medication now. She also forgets words and has neuropathy from the chemo. She is 74! The doctor did not attribute it to old age! The lesion in her brain was causing headaches and slurred speech and that has improved with the radiation and steroids. Sorry to be a downer here! We have to be with her 24/7 now and sometimes she gets annoyed at allllll these people up in her business! She really enjoyed Christmas though.

[DapperButch]

I had a client who I last saw at the end of September. She had no health problems.

In the beginning of October I got a call from her canceling her next appt., saying she was in the hospital as they just found out she had a brain tumor.

Today I got a call from one of her friends letting me know that she passed away the day after Christmas.

She was a great person and very much a giver to others. Cancer sucks.

[deb_U_taunt]

Originally Posted by DapperButch

I had a client who I last saw at the end of September. She had no health problems.

In the beginning of October I got a call from her canceling her next appt., saying she was in the hospital as they just found out she had a brain tumor.

Today I got a call from one of her friends letting me know that she passed away the day after Christmas.

She was a great person and very much a giver to others. Cancer sucks.

Cancer truly does suck. Hugs.

[julieisafemme]

Originally Posted by julieisafemme

My Mom is on hospice now. The cancer is in her lungs, spine, brain and liver. She just finished a 10 day course of palliative radiation. It did help. She is on all kinds of medication now. She also forgets words and has neuropathy from the chemo. She is 74! The doctor did not attribute it to old age! The lesion in her brain was causing headaches and slurred speech and that has improved with the radiation and steroids. Sorry to be a downer here! We have to be with her 24/7 now and sometimes she gets annoyed at allllll these people up in her business! She really enjoyed Christmas though.

Some good news on the neuropathy. The hospice nurses prescribed a drug called neurontin? or something like that and it has helped tremendously with the mobility in her hands. I came in tonight to say goodnight and she was typing away at the computer on an email to her friends list. She has not been able to do this for a long time. She was really happy!

Also the hiccups and burping from the radiation (she had shots through esophagus to the spine) has improved tremendously! That makes her super happy!

[uglyboi]

Originally Posted by DapperButch

I had a client who I last saw at the end of September. She had no health problems.

In the beginning of October I got a call from her canceling her next appt., saying she was in the hospital as they just found out she had a brain tumor.

Today I got a call from one of her friends letting me know that she passed away the day after Christmas.

She was a great person and very much a giver to others. Cancer sucks.

Cancer is cruel!!!!!!!!

My youngest sister was diagnosed with renal cell carcinoma January 3, 2012. She passed away on May 26, 2012. She was 43, physically active, never smoked nor drank and had no symptoms (discovered a swollen node on her neck). She left behind two small children. It makes no sense and it has been extremely difficult for me to accept that she is no longer with us. Just know that each of you all are in my thoughts and prayers!

[clay]

{{{{{{{{{{{{uglyboi}}}}}}}}}}
Sending you warm hugs and my deepest condolences on the loss of your sister.
Yes, this cancer is some cruel stuff....any form of it at all.
You are in my heart and all of us here walk with you...
Sending you comforting energies and white light energies....take care of yourself...may you find some solace and peace in all of this...hugs my friend...Clay

[DapperButch]

Originally Posted by uglyboi

Cancer is cruel!!!!!!!!

My youngest sister was diagnosed with renal cell carcinoma January 3, 2012. She passed away on May 26, 2012. She was 43, physically active, never smoked nor drank and had no symptoms (discovered a swollen node on her neck). She left behind two small children. It makes no sense and it has been extremely difficult for me to accept that she is no longer with us. Just know that each of you all are in my thoughts and prayers!

Oh, gosh, this is horrible. I am so sorry.

[DapperButch]

Originally Posted by julieisafemme

Some good news on the neuropathy. The hospice nurses prescribed a drug called neurontin? or something like that and it has helped tremendously with the mobility in her hands. I came in tonight to say goodnight and she was typing away at the computer on an email to her friends list. She has not been able to do this for a long time. She was really happy!

Also the hiccups and burping from the radiation (she had shots through esophagus to the spine) has improved tremendously! That makes her super happy!

Hi, Julie. Yes, it is most likely Neurontin. I take that too for the neuropathy in my hands/feet from the chemo. My doc acutally decreased the Oxaliplatin in my chemo more than once due to the fact that the neuropathy started so quickly in the treatment. She ended up stopping the Oxaliplatin a all together half way through the cycle of treatment.

Her concern was how young I was to have neuropathy. For most people it goes away after tx stops, but not unexpectantly, for me, it didn't. It isn't too bad though, I really don't notice it as much now. I mainly have the pain in my feet. My fingers are less flexible...meaning, they are stiffer...it is more difficult to type and I can't type as quickly.

Of course, at this point I feel like the oncologist made the right choice in stopping the drug, since my neuropathy is quite manegable. Of course, if I get cancer again I will have to wonder if it was the stopping of the drug that allowed some of the cancer cells to not be obliterated.