A New Acronym For Me to Use...CIPN

I was reading some blogs about Peripheral Neuropathy and discovered a new acronym for it; CIPN, Chemo induced peripheral neuropathy. The culprit, Taxol, oh yeah… I had that cocktail and like most sufferers, I felt the effects after my first intravenous drink. My Oncologist kept telling me the nerves would regenerate in 3 months. Three months later it was give it another three months. So I did, and a year later it was… well, just worse. 

Eleven years later, I’m still waiting to regenerate. 

There were 56 comments left for Phyllis Johnson at www.healthcentral.com, the blogger who shared her personal journey about the effects of the chemotherapy drug Taxol. She is also an eleven year survivor of Breast Cancer and also waiting to “regenerate”. As I was reading some of the comments to her post, I related well to most of them in regards to the neuropathy and the chemo brain fog that lingers for months to years after treatment, to having problems walking a straight line. 

Like many of us, our families don’t really understand why it’s so hard to open the soda pop can or hold on to things like we used to. It’s hard to explain why it hurts to walk on rough surfaces but sometimes it feels good. Massage…sometimes that’s the only way to get it; take a walk on the rocks it hurts so good and then sometimes it just hurts.

God bless these wonderful women for sharing the sunny side of their story even to the point of thanking Taxol for saving their life. My jury is still out on that one… debating side effects of Chemotherapy vs. living a comfortable life. 

But I finally read one I connected with because she didn’t really sugar coat the fact that CIPN sucked. I related to her inability to be in the cold, but that putting her feet in a cold bath seemed to help. I sure hope she finds a way to keep her feet warm in the winter without socks and shoes so she can share it with me. As of that posting, she was doing the same as me, wearing herself out putting socks on and taking socks off; CIPN feet just can’t stand to be touched by those things.

I am an eleven year Breast Cancer survivor who was treated with Taxol and felt the effects immediately. I can't stand the heat, it bothers my RLS, cold water helps.When it’s cold outside I feel colder from the other nerve damage in my left arm and leg from multiple surgeries that have made them incapable of properly controlling the change in temperature; when they get cold, the body doesn't do what it is suppose to do to generate heat to that area, it just gets colder...painfully colder. When it’s hot outside I feel hot in my neuropathy and it irritates my RLS but air conditioning irritates the nerve damage so I play the sweater and sock game. 

What I have found interesting in Phyllis Johnson's blog is that none of them had mentioned having problems with Restless Leg Syndrome. Several neurologists have told me that it goes hand in hand with peripheral neuropathy. RLS has been my biggest demon to deal with. When I am so tired from taking care of the CIPN and want to rest, I can’t. That's when the restless leg wants to rear its ugly head the most. I suffer 24/7 with the restless legs now, but it is also in my arms and shoulders too. My family is probably more confused because it helps to sit or lay down to ease the neuropathy, but it feels better to just keep moving with the restlessness of RLS.

 Like many CIPN'ers I have been on Neurotin...talk about adding to the brain fog...my primary care doctor at the time of my cancer treatments started treating the restless legs with Clonazepam and it worked wonderfully. Then I had to gradually increase the dose over the years; now on 2mg each night. But for the daytime, I have such a difficult time working because the restlessness in my legs and arms would end up being the biggest job for me to deal with everyday. Sometimes my boss would come by the office and see me working contently at my desk, and other times standing with my keyboard on top of a stack of boxes because my legs say it’s time to move around now and he thinks I have dance fever.

Another primary care doctor in another state prescribed Sinemet 25/100 for the daytime and it worked great for a time and then I realized I was eating it like candy because another doctor in another state I had to move to thought I shouldn't take Clonazepam because it was addictive...lol...are you kidding me...I'm going to have this the rest of my life so what the hell difference does that make as long as it works. 

My Neurologist agreed so I am finally back on Clonazepam...by the way, the withdrawals from that is terrible...something that doctor didn't think about when he took it away. The Neurotin is such a nasty drug, I wanted off of it so I thought I would just deal with the nerve pain...yeah that's good....just adds to my depression even more. It all becomes a full time job doesn't it? 

After visiting my third psych ward in the past eleven years, a doctor there prescribed Percocet. For the first two or three weeks, it worked great I was getting a full 9 and sometimes 10 hours of sleep at night. I have a license for Medical Marijuana and it was working great for the neuropathy, but it was such a pain to use, it stunk and I just felt like I was a criminal, so I was glad I could get off of it now that the Percocet was working so well. 
But once the medical marijuana left my system, the neuropathy pain was more evident. I checked into why the Percocet was prescribed(brain fog) and found it was for the RLS not the Neuropathy. I love that Doctor...for the first time in 11 years, I have not had one day of dealing with RLS, only the side effects of another controlled substance.

So I just keep trying and I just keep getting up every day and follow the same routine, trying to carve out a life for myself where you don’t have to make keeping your body and mind comfortable your main focus of the day. Who has time to find a job...I already have a full time job, it just doesn't pay the bills.