Cancer and Chemo Side Effects: I Am Fortunate and Tainted

Started by anonymous, July 24, 2015
2 replies for this topic
anonymous

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Posted on
July 24, 2015
During and since chemotherapy to treat my breast cancer, a few of the toes on my right foot go numb, and sometimes a few fingers on either hand for a very short period of time. I think this is called peripheral neuropathy. Now at over five years out from diagnosis, this still happens. It isn’t a big deal. It doesn’t really affect my walking or the use of my handsn — I am lucky.

To top that off, every time I fly, because of lymphedema issues, I have a compression vest and compression arm sleeve to wear. They are hot and uncomfortable, and sometimes TSA doesn’t know what to make of them. They are reminders to me, singing “one of these is not like the others, one of these doesn’t belong” inside my head because this extra flying equipment makes me feel "different" and "not quite normal" when I would rather just be happy and excited about a trip. The neuropathy and lymphedema concerns, instead are reminders that trigger my fear of recurrence every time something happens and remind me that I am a little different — and I am lucky.

The neuropathy could certainly be worse, a lot worse. It is the reminder that I complain about. Yes, I had chemotherapy. Yes, I am fortunate to still be here over five years out. It is those many moments where I seem to stumble on reminders that I need to remain vigilant about a cancer recurrence that make me grateful and grumpy. I am grumpy that I see a vascular doctor yearly who monitors my neuropathy and lymphedema. I am fortunate to be closely monitored.

I am grumpy that I can’t donate a kidney. A friend needs one, but they won’t take mine because I had chemotherapy. I guess I am damaged goods. I don’t like how that feels and it is another reminder. There is an inability to help a friend in need. It is beyond frustrating. Most of the fear-of-recurrence reminders are internal, like my numb toes, but I ran up against this one out in the real world talking to the National Kidney Foundation. I wonder what else is out there.

I am a donor on my driver’s license. I am grumpy as I wonder what other body parts are no good? Tainted? Inferior now? I wouldn’t even know where to call to investigate this. I am not sure I really want to know. Except, I want to know what else is out there waiting for me? I like the Boy Scout motto — I want to "be prepared." Cancer blindsided me and I don’t want to get caught again any more than I must. Maybe there will be complications regarding treatment for other concerns as I age? If I need more chemotherapy down the road, will the neuropathy get worse? I don’t know. It is futile to spend time worrying about it, I guess ... and yet I wonder ...

I also am grateful. I spend time worrying about these possible surprises. I want to be prepared for surprises. When I look at it this way, I sound pretty darn silly. When this happens, I try to pull my thoughts back into the moment. Some deep breathing. A little focus on nature outside my window. A quiet prayer or moment of gratitude. There. That’s better — at least a little bit, for now.

For now, I am grateful to be here. I am grateful for each and every day — every moment, every interaction. Gratitude is an awesome emotion. It can be used to counteract grumpiness about lingering side effects. For now, we are here, and here is pretty darn good.
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BarbaraTako

Member
0 Replies
Posted on
July 24, 2015
During and since chemotherapy to treat my breast cancer, a few of the toes on my right foot go numb, and sometimes a few fingers on either hand for a very short period of time. I think this is called peripheral neuropathy. Now at over five years out from diagnosis, this still happens. It isn’t a big deal. It doesn’t really affect my walking or the use of my handsn — I am lucky.

To top that off, every time I fly, because of lymphedema issues, I have a compression vest and compression arm sleeve to wear. They are hot and uncomfortable, and sometimes TSA doesn’t know what to make of them. They are reminders to me, singing “one of these is not like the others, one of these doesn’t belong” inside my head because this extra flying equipment makes me feel "different" and "not quite normal" when I would rather just be happy and excited about a trip. The neuropathy and lymphedema concerns, instead are reminders that trigger my fear of recurrence every time something happens and remind me that I am a little different — and I am lucky.

The neuropathy could certainly be worse, a lot worse. It is the reminder that I complain about. Yes, I had chemotherapy. Yes, I am fortunate to still be here over five years out. It is those many moments where I seem to stumble on reminders that I need to remain vigilant about a cancer recurrence that make me grateful and grumpy. I am grumpy that I see a vascular doctor yearly who monitors my neuropathy and lymphedema. I am fortunate to be closely monitored.

I am grumpy that I can’t donate a kidney. A friend needs one, but they won’t take mine because I had chemotherapy. I guess I am damaged goods. I don’t like how that feels and it is another reminder. There is an inability to help a friend in need. It is beyond frustrating. Most of the fear-of-recurrence reminders are internal, like my numb toes, but I ran up against this one out in the real world talking to the National Kidney Foundation. I wonder what else is out there.

I am a donor on my driver’s license. I am grumpy as I wonder what other body parts are no good? Tainted? Inferior now? I wouldn’t even know where to call to investigate this. I am not sure I really want to know. Except, I want to know what else is out there waiting for me? I like the Boy Scout motto — I want to "be prepared." Cancer blindsided me and I don’t want to get caught again any more than I must. Maybe there will be complications regarding treatment for other concerns as I age? If I need more chemotherapy down the road, will the neuropathy get worse? I don’t know. It is futile to spend time worrying about it, I guess ... and yet I wonder ...

I also am grateful. I spend time worrying about these possible surprises. I want to be prepared for surprises. When I look at it this way, I sound pretty darn silly. When this happens, I try to pull my thoughts back into the moment. Some deep breathing. A little focus on nature outside my window. A quiet prayer or moment of gratitude. There. That’s better — at least a little bit, for now.

For now, I am grateful to be here. I am grateful for each and every day — every moment, every interaction. Gratitude is an awesome emotion. It can be used to counteract grumpiness about lingering side effects. For now, we are here, and here is pretty darn good.
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jhale17

Member
0 Replies
Posted on
August 01, 2015
This is great Barbara. You have gained understanding and control of your cancer journey. I am sure you will handle whatever the future holds. In my case I am eighty-nine, a cancer survivor of fifteen years with four occurrences of Diffused Large B Cell Non-Hodgkin’s Lymphoma (DLBCNHL) and two spots of Melanoma. Like you I am fortunate, tainted, grateful and most of all I feel lucky. Here I list my reasons why I feel lucky. I was lucky to have DLBCNHL as it is easily treatable and if it came back it was treatable, I was lucky that initially I had a primary care physician that put together a task force of doctors to attend my needs, I was lucky to have an excellent cancer center nearby, I was lucky that initially I tolerated the gold standard chemo (CHOP) and radiation used for my cancer, I was lucky to respond to the treatments and achieve remission, I was lucky that my reoccurrences were spread over time and new techniques and treatments were developed, I was lucky that on the subsequent occurrences I responded to treatments and achieve remission and I was lucky to have support from a general cancer support group, family, friends, and as time passed I had all the resources of the internet. Most of all I had a strong faith that gave me the strength to deal. You could call it fortunate, you could call it normal, you could call it anything. I call it lucky.
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Diana R

Member
0 Replies
Posted on
August 02, 2015
Travel hint: Don't put on your compression garments until after you get through security. I put them in my carry on, and then on the other side of security I put mine on. Mine are very bulky (JoviPak or Solaris Tribute) and they do look rather alarming :)
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