Disabled With Kidney Cancer, John Seeks Government Grant For Accessible Home

by John Richard Nussel
(Alexandria, VA, USA)

One could only imagine having to rely on family members to help with just about everything with simple day to day tasks. To remain independent, I'm looking for a government grant to make my home accessible.

My life has taken such a turn that being independent again would take a miracle. For this, I know I can only do what needs to be done with what I have to make life easier.

Two and half years ago, I was diagnosed with kidney cancer. I had a left radical nephrectomy and was given a clean bill of health. I still had to have regular MRIs to make sure the cancer had not spread.

Eleven months later, I was told that the cancer had returned to my T-9 and T-10 vertebrae and needed surgery again to remove the tumors. The tumor on T-10 was successfully removed but the tumor on T-9 was too risky.

My spinal cord might have been damaged had they tried. We opted for CyberKnife radiation instead. It was more pinpoint and would cause less damage to all other cells and with the tumor hidden behind the spinal cord this seemed the best path.

Through both surgeries and the CyberKnife, I weathered it all pretty well. There was minimal down time, minimal pain and I was able to return back to work.

With the return of the cancer, I was then put on an oral chemo that was just FDA approved for kidney cancer. Kidney cancer is like no other cancer.

Traditional chemotherapy and radiation does not touch kidney cancer. So when the FDA-approved chemo came available I felt this was a blessing.

I continued taking the chemo for six months. At first it seemed it was working but then the cancer became smarter than the chemo and the cancer started growing again.

I have been able to work through all this with minimal side effects but was forced to take a temporary position with the company I work for in another state.

They had no positions available in my area. I needed to continue working to be able to keep the medical benefits and provide for my family.

My wife stayed in Colorado working her massage business while I moved to Washington, DC for the next two years.

I found a wonderful oncologist at the Lombardi Cancer center to continue my treatment. When I needed to switch chemo drugs, the FDA had approved three more and I felt blessed again.

I started on the new chemo and shortly after, I began losing strength in my legs. This was not a known side effect of this chemo but I reported it to Bayer anyways.

Starting in June of 2009, I began walking with a cane, and then I needed a walker, until I was no longer able to stand.

My wife quit her business and moved out to DC to help take care of me.

On July 12, I ended up in and out of hospitals with a staff infection in the leg, which left me with an open wound and a wound vac to help heal it.

I was a patient at National Rehab hospital for four weeks learning how to transfer to and from a wheelchair and strengthening my upper body.

I saw three different neurologists that gave me three different diagnoses as to why I can no longer walk. Transverse myelitis, Brown-Séquard syndrome and radiation myelopathy were their guesses.

In the end, it says that I have radiation myelopathy, which is radiation damage to my spinal cord from the CyberKnife radiation.

Not much is known and there are less than 10 cases in the US, so who knows if I will ever walk again? One can only pray.

My position out here in DC is only temporary until April at which time we'll be moving back to Colorado to a home that is not wheelchair accessible.

We thought we would need to sell our home but with the way the economy turned we are one of those people who owe more now.

We lost more than half of my 401K to be able to take a loan out to make our house wheelchair accessible for when I get home.

Being disabled has many challenges and if you do not have a wheelchair accessible home you then have to rely on many family members to do day-to-day tasks.

This is how I am living in DC. We are doing the best we can with limited resources and this is why we are looking to apply for a grant.

I truly want to be independent rather than dependent, as would anyone. We know we cannot do anything about living independent while we are here because we are only renting.

Our thought was that if we could get the money needed to change our house in Colorado so when we do move back it would be ready.

Thank you very much for this opportunity to make our story known to those who could be in a position to help. Sincerely, John Nussel.