Neuropathy Question

Hi,

I'm very worried about my worsening peripheral neuropathy. I just turned 37. I'm an artist and musician and my hands and feet are becoming useless due to aggressive chemotherapy to treat Leukemia. I have no idea how I'll find value in my life if I survive cancer only to find I can no longer do the things that give my life purpose and joy.

I've read articles, but I don't see a lot of information about whether the neuropathy can actually be reversed. It seems like the best I can hope for is that the neuropathy will stop progressing when I'm done with chemo. I still have a lot of treatment left and I'm already at the point where I'll need to regain some feeling and motor function to start performing again.

Has anyone recovered from this? Is there any hope of getting feeling back in my hands? If not, can anyone recommend a process for discovering new purpose in life? I really don't want to give up everything I love at 37, but I need a lifeline here.

Comments

  • 9 Comments sorted by Votes Date Added
  • Try new things! I love the outdoors and hiking but physically can't make it right now so this summer I picked up cross stitching and am making christmas presents... it especially makes me feel good to do something with purpose since I can't work and rely on others a bit for assistance around the house and rides. I play lots of games to keep my mind active. I recently adopted a new rescue dog so I am busy training... ideally someday I would like to have a therapy dog to visit patients with but not sure if my new pup will get there or not - regardless she is very cuddly, reasonably behaved and has noticeably reduced my stress levels. Obviously what works is different for everyone (I haven't experienced neuropathy myself) so I guess the key might just be staying open minding and experimenting - just don't give up on life!
  • Art and music defined me as a person. They were the things that gave my life meaning. They weren't just things I enjoyed doing. They were the only ways I felt like I added value to the world. They were my only talents. They were my only sources of worth.

    The best person I'll ever be is already gone. It hardly seems worth going through all of this treatment only to become some middle aged, physically ruined, mediocre man. I'm going to lose the last few years of my thirties to cancer. If I survive, I'll have nothing to give me any sense of purpose and belonging. I'm only living out of obligation to my family now. I don't see how I'll ever enjoy life ever again.

    When you have a passion or obsession that motivates your entire existence and drives you to excel in one specific thing, how can you just turn that off and decide to be normal like everyone else? I don't care if I never see another movie, attend another barbecue, or go on another hike. I don't care if cancer drains my life savings. I don't care if I lose my job. None of that matters to me. Not being able to make music is like tearing out my heart. I might as well be anyone after that. There's no reason to be me.
  • I'm sorry you feel that way, I hope you find a new meaning to life though!
  • I always thought I was alone which lead me to always thinking Nobody out there has it worse than I do. I use to look down on people with their mundane problems which would just alienate myself more. Being diagnosed with ALL my senior year was hard on me. Especially since I was looking forward to going to Stanford. On one Friday night all my hopes and dreams, my ambitions, all my goals in life were ripped away. I did pretty well with all that, realized I would never be the same but I got past that. Got married and had a kid. On my third anniversary 5 years after diagnoses I had to tell my wife that my cancer was back. This time around I struggled with a few things. I just wanted to feel the way I did when I was 17(You know who doesn't). They told me I would be back to normal life in 2 years. It took me 5 years to find out that would never happen. But I have regained feeling in my peripherals and my overall pain has decreased. You may never feel "normal" again but the human mind is a wonderful piece of machinery and humans are very capable of learning to do the things they love in a completely different way. I will never snowboard, ride dirt bikes, or be a Dr but joy can be found almost anywhere as long as we are looking. I can paint and draw and I have taught myself how to play bass. At this point I will be very lucky see my late 30s, It would be pointless to just give up and waste away. I want my friends and family to know me as the guy who lived his short life to the fullest and not just be the kid who struggled through cancer twice just to waste away.
  • juls4juls4 Community Member
    I probably didn't go through treatment as long as yours, but after 4 months of chemo for breast cancer, I had moderate neuropathy in my hands and feet. I was told it would probably go away and that it might be 3 months, or it might be years. It actually only took 6 weeks after chemo ended for 100% of my neuropathy to go away. From what I've read online, the worse it is, the longer it takes to resolve, but the majority of people do see continual improvement each month and are mostly if not completely better within a year after chemo. Maybe you could do research on how much chemo it takes to cause permanent damage to nerves. Honestly, if it's such a quality of life issue, you may want to discuss with a doctor if there are any other options for chemo drugs, or if there are medications to help protect your nerves. You could also see if you can find doctors who specialize in neuropathy. That way, if you are experiencing lasting neuropathy after treatment, you have a plan in place for who to contact, what exercises/food to eat (if that makes a difference?) and give yourself your best chances at recovery. My other advice is if doctors brush it off like it's no big deal, make sure they understand that life isn't life for you if can't do what you love. They often ignore quality of life issues and focus just on whether the physical body is dying or not. Don't let them just dump you onto a therapist to deal with your loss. It's their job to make sure the medical options to help you are exhausted first! Good luck!
  • Thank you for these comments, all. It's encouraging to know there's at least some hope. Maybe some of my recovery will just be learning how to use underutilized muscles in new ways. I'm trying to be patient.
  • My friend, who went thru chemo, encouraged me to wrap my ah da and feet in ice packs during treatment. That seemed to help. I have some neuropathy in my left hand, distal fingers but it's improving as time goes on.
  • I hope that you are able to continue with the hobbies you love. The neuropathy I experienced from treatment improved after stopping the medicine.
  • I'm an artist too, with stage 4 brain cancer. Chuck Close has always been a major inspiration for me. He found a way to keep painting even after losing almost all movement in his limbs due to a stroke. As for music, are you able to sing? Singing, even alone or with family, has brought me great joy throughout my treatment! It feels creative and you can even do it laying down. I have metastasis to my lungs so some days I can't get through a whole measure without coughing, but the good days make it completely worthwhile. Best of luck to you.