Everyone has inside of him or her, a piece of good news.
The good news is that you don’t know how great you can be!        — Anne Frank

Music to heal by; in the steroid infusion room

In my last blog I wrote about the mysterious affliction that seemed to be attacking my health and my central nervous system causing me to have difficulty walking. After weeks of tests, we couldn’t find a real solution and were beginning to think that some kind of unknown virus must have attacked my spinal cord which could have caused a disconnect in the central nervous system. Thus, the problems in my walking.

At the time, I felt relieved to have any kind of explanation!  And I was willing to work really hard in rehab and physical therapy to re-learn how to walk, how not to lose my balance, how not to fall. I had an awesome team of people including Jake my Physical Therapist. He was so encouraging that I could do it. And I tried and tried and tried. I kept my positive attitude, but I could tell that I was not really gaining ground on the effects of the “unknown attacker” on my central nervous system. It felt like I was battling against a brick wall. Although I never said it, I wondered if I would ever walk again.

Joy’s amazing neurologist, Dr. Rebecca Fisher

Thank God, I am surrounded by some incredible people like my doctors who will not stop looking for a real diagnosis, who insist we really must know what we are fighting so I can receive the right treatment and get well. Two of those doctors, my gentle Primary Care Physician, Dr. David Kamlet, and my effervescent, not-to-be-stopped neurologist, Dr. Rebecca Fisher, went to bat for me. And they didn’t stop. Before long, my blood work and my spinal fluid had been sent all over the country to the best labs for help with a diagnosis. After weeks of “cooking,” the Mayo Clinic came back with a real diagnosis: a rare disease, something that is almost never seen or heard of. But what is amazing to me about this diagnosis which may seem like “bad news” when you first hear about it – is really the beginning of my healing “good news.” My body with its crazy antics, antibodies, and its “bad news” will likely save my life.

Yes, it’s quite an amazing story.

As I’ve said before, the situation is very complicated. I now know that I have a rare syndrome called Paraneoplastic Syndrome with a very aggressive antibody called amphiphysin in my blood and spinal fluid that searches out cancers in the body – especially breast cancer. When my doctors heard I had the Paraneoplastic Syndrome, they immediately ordered a PET scan test for me to see if there was any cancer in my body. And yes, they located cancer in my right breast and in my lymph nodes. I was immediately sent to a top-of-the-line breast surgeon Dr. Tartter, who did biopsies. He will do a lumpectomy and remove lymph nodes on Monday September 30 at Roosevelt Hospital.

And, as I’ve already stated, the overly active antibodies in the Paraneoplastic Syndrome also attack the central nervous system starting out by attacking the ability of the legs to function which is what happened to me in the last weeks (it’s called stiff legged person). It also causes back spasms, a shock response to loud sounds, feet that don’t feel things or that overreact to touch, etc. If left untreated it continues throughout the body doing damage. My doctors started me on massive intravenous steroids to stop the aggressive immune system from harming further my ability to walk, which has temporarily helped. We are hopeful that they have suppressed the antibody soon enough that I should recover most or perhaps all of my walking ability. Once we have dealt with the breast cancer problem that should stop the aggressive antibody from attacking my nervous system.

I find this all really amazing, don’t you?

My sister Shirley arrived from California to help me go to different tests and to help me deal with the news as it came to us. She was wonderful pushing my wheelchair around NYC. She finally left to be with her family. Fortunately I have Manny and Paula, a wonderful Physical Therapist and aid who are helping me in my home. And I have friends who are sleeping at my apartment, cooking for me, walking with me, making sure I am okay, and who are really stepping up to the plate to help. Too many names to begin to mention but I must mention a couple: Jane and Lou Gropp, Alice Austin, Curtis Harwell, and the Rev. Vicki Sirota have been there 100% for me. I can’t thank them enough.

My spirits are good and I am certain I can lick this, but obviously I need all the positive thoughts and prayers I can get. Yours included, please. Thank you so much.

Yes, I am quite confident I will do very well – and that God will help me through this next stage of my life. After all nothing can separate us from the love of God!!

• Sometimes we want to be very independent. Is it difficult for you to show your vulnerabilities to others?
• Can we admit to each other that we really do need help?

O Blessed One, we all take such pride in our independence. We want to believe that by our own efforts and work we can supply all our needs. But sometimes that is just not possible. We need to allow ourselves to admit that we are needy, that perhaps in our moments of weakness we may find our greatest strengths. Help us to come to you like small children – needy but not ashamed. Thank you for your endless love to us. Amen.

Joy Carol
www.joycarol.com