May 6-12th was Peripheral Neuropathy (PN) Awareness week. As a nurse, I am aware of PN but always associated with a complication of diabetes. It was not until I received harsh chemotherapy for the treatment of a brain tumor that I learned PN could be one of the side effects of chemotherapy treatments.

Here is my story

I was diagnosed with a central nervous system lymphoma on November 24, 2014. I was told the tumor was not operable and I would have to undergo a series of chemotherapy treatments to treat this type of tumor. I learned that I would have to be hospitalized for the treatment due to the toxicity of the drugs as I needed to be observed. Starting in mid-January 2015, I went to the hospital every other week for six treatments of chemotherapy.

The plan was for me to be in the hospital for two days to ensure that the chemo cleared my system. After each treatment, I had to have lab work done at specific intervals till I reached a certain level. If I did not reach that level, I had to receive IV fluids to flush my system.  Over the course of 6 chemotherapy treatments, my stays were never less than four days as I did not reach the desired level. As I was so sick, I did not question this but followed the plan as it was laid out by my hematologist/oncologist. Now looking back, I wonder if the fact my body did not clear the chemo in the expected time is the reason I developed peripheral neuropathy?

There was some good news:

After my 3rd round of chemo, my doctor ordered an MRI. After the MRI, I went to the clinic to learn the results. I had thought the doctor would tell me the tumor shrunk, grew or remained the same, so you can image my surprise when the doctor informed my husband and me that the tumor, was gone! We were later told by the Pharmacists, who was part of my oncology team, that the protocol I was receiving was designed to work fast if it was going to work at all. We were surprised and grateful for this news.

As a result of the eradication of the tumor, I was starting to become more cognitively aware of what was going on for the first time since my diagnosis. We began to have hope.  Despite the good news, my hematologist reminded me that I would need to continue the chemo as planned. I accepted his recommendation because I trusted him.

After my 5th round of chemo, the team came into my room to exam me and found that I had no reflexes in both my feet. This was a surprise to me as I had been walking a few hours before with no problems.  I could see the concern on each person’s face and knew this was not good. The attending physician was called and held a team meeting to determine next steps. The attending explained that one of the drugs (Vincristine) that was part of the protocol, could be toxic to the nerves. She said she was going to remove the drug from the mix going forward.

In an instant, I could not feel my feet or walk by myself. I was scared and unsure of my future. Physical therapy was called to evaluate me. The doctor said there was nothing to do at this point except to watch and wait. The therapist thought I would do well with a rollator walker and had it delivered to my home.

Once home, my husband encouraged me to walk as he thought this would help, but due to weakness, after a few steps, I would fall. I knew this was not good, so I told my husband that I did not want to walk as I was afraid I would break my hip or an arm and that would set me back further.

My husband called my doctor to let him know my situation and that he was worried. The doctor recommended I go to outpatient physical therapy. I was able to get an appointment right away with the local HealthSouth Rehabilitation Outpatient Center as it was close to my home. After evaluating me, the therapist recommended I not use the walker as my muscles were too weak to hold my body and I was a high risk of falling. I had to get a wheelchair to be safe. I was started on physical therapy as well as occupational therapy as my hands were also impacted. The therapist said this was due to the chemotherapy and I had developed chemo-induced neuropathy.

I started going to therapy three days a week to build up my muscles, but it was a slow process. The therapist explained that progress would be slow as I was still receiving chemotherapy and advised me to have patience.

As we neared the end of my chemotherapy treatment in April 2015, my hematologist said he wanted to add two more rounds of chemo to the routine. He said that this was for insurance! The good news was that these last two rounds were made up with a single drug so I could do them as an outpatient and would not have to go into the hospital. Appointments were made and I felt like I could see the light at the end of the tunnel.

The next few weeks were hard due to my immobility. My husband had to be with me at all times as I could not walk and needed assistance with all of my activities of daily living. It was a challenging time, but my husband was great and took excellent care of me. Due to the weakness, I was in bed or on the couch most of the time. I had no appetite, so I did not eat or drink much. I knew I should try to hydrate, but when I did try to eat or drink I became nauseated, it was a no-win situation.

Starting to Re-gain Control 

We got through the next few weeks the best we could. In preparation for my last clinic appointment with my hematologist, I called a friend at the inpatient department at HealthSouth and shared my story. She recommends I come in for an evaluation by the physiatrist.  I did this, and the doctor agreed that I needed aggressive physical therapy. He gave me a note to give to my hematologist with his recommendation for inpatient rehabilitation. My hematologist agreed, and I was admitted to HealthSouth for a two week period.

Going to another hospital was the last thing I wanted to do, but going for inpatient rehabilitation was the best move I could have made. Aggressive therapy helped me to begin to heal. Eventually, I built up my strength and learned how to transfer with assistance. I began to get my confidence back which was a huge relief. The physical therapists devised ways for me to start to walk. Eventually, I was fitted for braces to support my ankles. These allowed me to walk with someone close by. Initially, I used a walker but graduated to a cane. I also received occupational therapy for my hands. They seemed to improve quicker than my feet, but I still needed help with dressing and other things as I could not pick things up or zip/unzip a zipper or button/unbutton shirts or pants.

I was discharged from inpatient therapy after two weeks. I required outpatient rehabilitation for an additional six weeks. At the end of treatment, I was able to do all of my activities of daily living independently and was walking with my braces and a cane independently which was a tremendous improvement for both my husband and me.

One of the therapies I found most helpful was pool therapy. I felt the most normal in the pool as I knew I would not hurt myself. I have always loved the water and was a good swimmer so exercising in the water was familiar to me. The water therapy treatments I received helped me physically and mentally. Once I was discharged from formal therapy, I started to do Water Aerobics at a pool near my home. I have continued to do this to this day, and it has helped me continue to improve.

Today, the best way I can describe my current situation is that I feel like I walk around with ski boots on 24/7. I am always conscious of my feet. Sometimes they burn, sometimes they feel cold, but are warm to touch. They feel numb most of the time, but at other times it feels feel like I am walking on crunchy bubble wrap. I can flex my feet a little better than I could, but my toes do not move. I have to be careful when walking as my toes can catch and cause me to fall.  My hands and upper body strength is back to normal, but my legs remain impacted. At 3 years since the chemotherapy ended, I continue to heal, but don’t hold out a great deal of hope for a full recovery from the neuropathy or feet drop.

As a result of these conditions, my doctor has advised me not to drive. I am surprised that I have adapted to not driving. I was always independent and not driving has caused me to depend on my husband and others. I have started to use UBER/Lyft if I need to go somewhere and can’t get a ride. I think I have adapted to this loss as I now know how sick I was and am grateful that I am still alive and how far I have come.

Education is Power

Educating myself about peripheral neuropathy has helped cope better and try things that might improve my situation.  One of the resources I find very helpful is the Foundation for Peripheral Neuropathy.   The organization provides information written in plain language, so it is understandable. They also offer resources that I have shared with my doctor and tools that help me cope with this condition. Their e-newsletter includes an example of how other patients cope, which lets me know I am not alone.

As a Brain cancer survivor, I am grateful to be alive. As a survivor, I try to manage the PN and foot drop as best I can. I know that the chemotherapy eradicated the tumor and without it, I would have died. I have no illusion about this and am learning to live with these complications and adjust to my new routine.

If you have PN or know someone impacted by peripheral neuropathy, I hope this post lets you know that you are not alone and there are things you can do. Remember there are treatments and tools you can use to address pain, mobility issues and other symptoms you may experience as a result of peripheral neuropathy. Diagnosing and treating this condition is challenging. If you think you have peripheral neuropathy, talk to your doctor about your symptoms. Neurologists are the types of doctors who specialize in this area of medicine. They will examine you, make the diagnosis and order needed treatments. Many neurologists are also doing research in this area so sharing your story is essential so they can find how PN impact people and discover new treatments to treat this challenging condition. You can find a specialist in your area on the Foundations website. Sign-up for the Peripheral Neuropathy free E-newsletter so you can keep up to date on advances in this area.

If you have been impacted by PN, feel free to leave a comment how PN has impacted you. I wish you well!

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