Tuesday, May 27, 2008

God is Good

The long Memorial Day weekend is over.

It has been a tough few days for me, but the dreaded predisone helped a great deal. However last night it truly took hold of me and literally took my breath away. I felt a horrible tightness all around my midsection, and it was a struggle to take a full breath.

When I spoke to the doctor's office on Friday, there were no guarantees that I would be able to get the chemo treatment this week...despite the fact that my health is spiraling very fast.

When I woke up this morning I had hoped that I would hear from the doctor's office, but in my heart I knew that it wouldn't happen that fast. Especially since the pharmaceutical company is located in California, and there is a three hour time difference.

I decided to read the paper for a bit, and when I looked at my horoscope it said, "There's no limit for what you can achieve today. Let your senses go wild and experiment with your ideas."

Just then the phone rang. No, it wasn't the doctor's office, it was a Newsday reporter! She had heard about me from another reporter that was publishing our wedding announcement. (BTW...our announcement will appear in Newsday this Sunday, June 1st! Be sure to look out for it!)

Anyway, she is the editor of Newsday's "Ask the Clergy" section in the weekend's paper, and wondered if I'd like to participate! I explained that I am a newly ordained minister without a "church" at present, but she didn't care! She was impressed with the little bit of background I told her, and she thought I was quite an eloquent speaker. So, I will be writing a small piece for her, which will be published on June 28th. Cool, eh?

Feeling all charged up after that call, I took my chances and called Dr. Rumore's office manager a few minutes later. She promised to call me back in a few minutes.

Within five minutes the phone rang and she said, "Are you free tomorrow?"

Believe it or not, Genetech approved the treatment over the long weekend, and the Rituxan is sitting in Dr. Rumore's office as I am writing this!

I will have my treatment tomorrow morning at 9 am!

Thanks, from the bottom of my heart, to all of you who sent me prayers and good wishes over the last few days. They have been answered.

And a special thank you to Dr. Rumore and his staff, and especially to Genetech Pharmaceutical Company.

I will try and get some rest tonight, and be ready 1000 percent for the chemo treatment in the morning.

God is good...ALL THE TIME!

Thursday, May 22, 2008

I Can Do This

I am trying to be strong.

I am really angry inside, but I am trying not to let it show.

At the end of this evening's blog, I am going to ask God to give me as much strength as I can to get through the next several weeks.

Yes...I need chemo again. Dr. Spiera was not at all happy with the status of my health at today's visit. He said last week's bloodwork results were status quo, nothing out of the ordinary. But after he thoroughly examined me and asked me many questions, he said I need Rituxan as soon as possible.

He tried to call Dr. Rumore while I was in the office, but was unsuccessful in reaching him. Dr. Spiera said I should start prednisone (ugh) immediately to get me through until the treatment. He wants to follow the Rituxan RA (rheumatoid arthritis) protocol...1000 mg. one day, then 1000 mg. fifteen days later. Just as last year.

Dr. Rumore finally called me this evening around 9:30 and was shocked to hear the news. He couldn't believe how fast my health has changed, and will make the calls tomorrow to get the approval. We just don't know if my new insurance company will pay for the treatment. If not, hopefully the pharmaceutical foundation will donate it again as they did last year.

Either way, the longer I wait, the worse my health will be...day to day. I will follow up with a phone call to the point person in Dr. Rumore's office tomorrow to see if they have any tentative dates. And I will start the 40 mg. of prednisone (double ugh) tomorrow after breakfast.

This is really difficult.

I know in my head that I need to have the treatment in order to get well. And I have been through this before. But that doesn't make it any easier.

Dear God,
I am aware daily of your presence within me as the ultimate life energy, force, mind and spirit of my selfhood.

I completely turn over the will of my body, mind and soul to you.

I totally accept my inner oneness with your presence, power and wisdom and love, and will think positively about myself and my life.

I totally accept that healing and good health are the natural ways of life for me, and I accept this throughout my body, mind and soul.

I call forth into the presence of my creator within me, Almightly God, my creator.

I affirm that through your love for me, your creation, you allow me to reprogram my mind with thinking that is in tune with your will for my soul's purpose in this lifetime.

For this realization I give thanks.

I let it be so.

And so it is.

Thursday, May 15, 2008

The Spiral Begins

It's the middle of May, and the last two days have been absolutely gorgeous. But the rains are heading our way, again.

I want it to be summer-like temps now! Enough with the rain. The rainy season was supposed to end in April, right? Isn't the saying "April showers bring May flowers?" No one ever said anything about the rains in May!

In between the raindrops, we have had some sunshine. I have been out in the garden planting flowers, as well as taking care of the pool. Unfortunately I haven't gone in because the air is just a bit too nippy.

Over the last two days I have seen a dramatic change in my health. I can sense things changing in the upper portion of my body, as well as my mind. Friends have said that their joints are bothering them because of the barometric pressure changes, but this is different. The pain is becoming intense.

Yesterday morning I met my friend Julie at the park, and we walked our pups for over an hour. My legs are still rather strong, but my mind seems to mix up the words before they get to my mouth. And I am dropping things much more often.

I have sharp pains in my shoulders and elbows, and an overall achey feeling throughout my arms. I don't sleep through the night, and am completely exhausted each afternoon around 1:30.

My mom reminded me that this was the way the disease process started back in 2004. I'd be sitting at the dinner table, and I couldn't hold on to my fork. Or I would start speaking, and simply forget what I was saying mid-sentence.


Why is this happening to me again? WHY?


I had been doing so well for almost a year. One whole year. But I knew in my heart that the remission couldn't last forever.


My appointment with Dr. Spiera is next Thursday, and I went for my muscle enzyme bloodwork on Tuesday. It really doesn't matter what the blood tests come back as...because both Dr. Spiera and Dr. Rumore told me that their decision of starting chemo would be based on how I am doing physically.


The drawback this time is that any treatment moving forward is all a "shot in the dark." There is nothing set in stone in the medical journals, as far as treatment procedures at this point in my diagnosis. I have to trust my physicians (which I do), and keep God really, really close.

Despite my symptoms, I have pushed myself to continue my schoolwork. I am not studying as much as I want to, but I have to listen to my body.


On a good note, my new friend Lynn completed the logo for my ministry. She worked tirelessly for two weeks, with some assistance from her students. I am so blessed to have met her, and want to thank her again from the bottom of my heart for all that she did!
Last week our friends Joanne and Kristen invited some of the gang over to watch the wedding video. It was so much fun seeing everyone's reactions to the day's events. What a beautiful thing!

Now we have to work on thank you cards. Yes, we got them already.


Isn't the photo fantastic? (if I do say so myself!) And I am sending our wedding announcement in to Newsday. Can't wait to see it in print!

I am having trouble typing, so I will say good night for now. Keep the faith!

And please, keep me in your prayers, okay?

Monday, May 05, 2008

Running for Those Who Can't in 02:35:48

Despite yesterday's dismal weather at 8 am, 5,500 runners from all over the United States gathered near the Cradle of Aviation Museum to begin their long journey to complete the 10K, half marathon and marathon races.

Among them was one very special person--Lisa Korcz of Levittown, New York. Lisa dedicated her first-ever half marathon to The Myositis Association (TMA), in my honor.
Thanks to many of you, Lisa met her goal of collecting $1000. In fact the money is still coming in!

Our friends came by our home at 6:30 to caravan to the park. I can't remember the last time I was up and out at that hour! We drove out to Eisenhower Park, parked the cars on the outskirts of the park, and took the long hike to the starting line.

The skies were overcast and the ground quite damp, but the rain never came down upon us! As we approached the starting line area, you could feel the magic and excitement in the air!







Trish, Karen, Stef, Chris, William, Jacky, Sally and I took our positions right past the starting line so that all of the runners could read our sign. We wanted to show everyone how proud we were of Lisa, as well as educate the world about myositis. Each of us wore our special myositis shirts that I designed specifically for the event.
Watching thousands of runners take off after the sound of the gun, led by three "runners" in wheelchairs, sent chills down my spine. What a magnificent sight! God bless them all!

Local news crews filmed us, while many of the marathon runners gave us the 'thumbs up' sign as they passed us along the route. If people learned one new word for the day, MYOSITIS, then it was all worthwhile!

We waited to find Lisa amongst the hoard of athletes, and finally spotted her on the first turnaround. She gave us a little spin, showing off her t-shirt, and continued on her destination! After cheering on the other runners, we walked back into the park and headed towards the finish line. In just two hours, thirty-five minutes, and forty-eight seconds, Lisa completed her first half marathon and proved that if you set your mind to something, nothing is impossible!

With teary eyes, I met Lisa at the finish line, and I gave her a huge hug. No matter how many times I thank her, I don't think she'll truly ever realize how much this meant to me.

I want to run in next year's race.

I want to be an athlete again.

I want to get up every day without pain, with the ability to just live a normal life again.

Maybe one day I can. But until then, it will take more than just one person running for myositis to make a difference.

We need people to understand that researchers cannot find a cure without financial support. Even the local media didn't seem too impressed with Lisa's story! They said that every day, people go out of their way to help others with cancer, leukemia, lupus or MS.

They just don't understand that there are thousands of us living with this rare, incurable disease...and no one wants to take the time to listen to our stories.
In order to find that cure, it takes knowledge. If the press won't do a story on myositis, how can people find out about it?

I hope and pray that this is the just the beginning of the education process here on Long Island. Thousands of people read our banner, and learned about my story.

With all my being, I am dedicating my life to helping others with chronic diseases. And, I am just in the beginning stages of planning a huge event to raise money for TMA.
Stay tuned...!

Saturday, May 03, 2008

Understanding The Mind

My body appears to be slowing down. Little by little, I see the subtle changes taking place. With each step, it takes more effort to move one leg in front of the other.

I can feel my joints and muscles as they try to do the most simplest of tasks. The rubbing of my hip muscles as I climb up the stairs, the twinge in my knees, the sharp pain that goes right thru me...all signs that my body is starting to break down again.

Mentally, I am ready for whatever needs to be done to get me back on the right track again. My next blood test is in two weeks, so the docs can have a definitive look into what is actually going on in my body. Then in three weeks I am off to NYC to see Dr. Spiera. I will hold on tight until then.

On Thursday I went out to Patchogue for my second NeuroTrax. This test is specifically for early detection of cognitive impairment in clinical practice.

Cognitive health is a term that refers to the wellness of brain function. While the ability to perform normal activities of daily living is usually taken for granted, it depends on complex brain function. Different parts of the brain interact to result in our ability to think, remember, read a map, and perform the effortless movements and thoughts that define who we are

I should have the baseline results in a few weeks, but the final results can take up to six months. I made an appointment with my neurologist for the first week in October. Time will tell.

I am continuing on with my metaphysical studies, and am truly fascinated every time I turn a page in my book. I just concluded the section on "The Metaphysical Psychology of Consciousness." In order to keep pace with this ever-changing world, one must truly learn to understand one's consciousness. In metaphyics today, it has been said that "The examined life is far more worth living." How true that is!

Yesterday's lesson was entitled "Yoga and the Mind," and I was fortunate to find out that the Eyes of Learning, (a local metaphysical study group) was holding a lecture on "Our Mind and How to Control It."

You know that it was no mere coincidence that my studies and this lecture were on the same day, right?

My friend Dawn accompanied me to the lecture which was presented by Swami Mokshapriya Shakti, PhD. She is affiliated with the Yogashakti Yoga Center in Richmond Hill, Queens.

"Mokshapriya" has been a spiritual guide and yoga teacher for over 35 years, and was ordained in India as a Swami. She talked about the various methods one can control and gain power over one's mind. It is important to first understand how the mind works so that we can learn to control it through various practices.

She ended the program with a deep breathing meditation. Towards the end of the meditation, I had another "out of body" experience, where I actually could not catch my breath. This is the second time I was in a group meditation where I seemed to "pass" to the other side. I was actually startled, but brought myself back into reality. I cannot explain why this keeps happening, but I know that everything I experience is for a reason.

The evening's lecture and the day's classwork was my first real introduction to the concept of yoga. The literal translation of Yoga is "Union with God" or the "absolute state of consciousness."
Generally, there are seven psychic centers or chakras. They are located at the base of the spine, naval area, spleen, central upper body adjacent to the physical heart, the throat, middle of the forehead, and the entire scalp area.

Each chakra relates to certain stages of consciousness. Thus by more fully activating each chakra, the mind grows in awareness.

The basic idea is that this psychic center/chakra, and what is referred to as "kundalini" or life force, is released from the base of the spine and travels upward through the center of the spine. At that point it activates a psychic nerve flow along the outside of the spine in a feminine/masculine surge of psychic energy.

As this life force rises up, it activates each chakra into greater activity, bringing a new level of awareness to the human mind. For most people, this activation takes place one center at a time. But activation of all centers may be experienced all at once...bringing total mental enlightenment to the one having the experience.

This has opened up a brand new world to me...and I am interested in learning much more about each of the major yoga systems, including Bhakti, Karma, Jnana and Raja Yoga. Between my studies, I will research several yoga centers to find out what is best suited for my life.

Until next time...God bless!