Wednesday, February 28, 2007

One Week Down and Counting

It's been just over a week since I finished my last Rituxan treatment. It was a rough few days...I felt so exhausted.

I did go out on Sunday, but it was tiring. Since I was chosen as this year's "Queen of Mardi Gras," I had to attend a rehearsal luncheon. It was great to be out, but I am not allowed to hug and kiss. (Everyone who knows me understands how difficult that is.) Then, that evening I went to an Oscar party. Too much for one day. I thought I was going to pass out.

It was beautiful outside that evening as we drove had finally snowed a little bit. The night was so still...everything was coated in a blanket of white. There is something about the peacefulness that makes you truly appreciate Mother Nature in all her glory!

I have an appointment to see my rheumy on Tuesday to find out how I am progressing. I am nervous and excited about what he has to say. I suppose he will take blood tests, but I was told it could take 2-8 weeks until I see some positive results.

Even though my body is still so weak, I know in my heart that I must stay focused. Spring is just around the corner. Daffodils blooming, opening the pool, walks on the beach, much to look foward to!

I have realized that life is like a rollercoaster ride.. all the ups and downs and bumps along the way.

With a chronic illness, you never know what will happen from day to day. But one thing I know for sure is that I have so much I still want to I pray that my body stays in sync with my mind!

Saturday, February 24, 2007

Rituxan a Go Go!

Since that horrific day in September, all my docs felt that my only option at this point is to receive two Ritxan treatments. Now, Rituxan/Rituximab is not FDA approved for MCTD or Polymyositis. Therefore, United Healthcare denied my treatment. Sure...why not...another fight on my hands.

I contacted Dr. Fred Miller at the NIH to see if I could get into his Clinical Trial, but he said I don't fit "in the box." (No one ever said this was going to be easy...but come on now!)

Dr. Harry Spiera has had great success with his myositis patients and Rituxan. Dr. Peter Rumore is using Rituxan for his RA patients with great strides. Cytoxen was mentioned by Dr. Mark Gudesblatt, but as a last resort. It is a very dangerous drug.

Meantime I am back on prednisone (let the fat begin) and I saw a pain management specialist who gave me a nightime pain killer to add to my ambien regime. My body became extremely weak again, especially my right arm and hand.

Good news...after seeing Dr. Rumore, he said he couldn't stand the insurance company any longer. He said he wants to cure me. So, he contacted Genetech, Inc. who manufacturers Rituxan and they offered to send it to me for FREE!!! Yippee!

The treatment protocal--One Course of Treatment: (2 infusions) Day one, 1000 mg in intervals for 6-8 hours. 15 days later, 1000 mg in intervals for 6 hours.

Rituxan works by targeting specific B-cells and selectively reduces them in the blood.

Day One: February 5, 2007 I had my first Rituxan infusion. The infusionist started it slow and kept checking my vitals every fifteen minutes. First they gave me a bag of cyumedrol (steroids) and saline, then started the Rituxan. Around mid afternoon, a headache came on big the infusion rate was slowed down. As the bag finished, they added some more saline and had me sit still for a half hour. I went home and felt okay for a few days until the steroid wore off. Oy...I felt like I got hit by a truck...and had the worse case of the flu.

Day Two: February 19, 2007 My last treatment started a bit late, but it went extremely smoothly. They first gave me cyumedrol again with saline, then started the Rituxan. Vitals were once again taken every fifteen minutes, then spread every half hour. I finished the treatment in six hours, and then sat around to be sure I was ok. The next two days were fine, but I am now in severe pain...undescribable actually.

The infusionist nurse told me it would take 2-8 weeks to see if the drug is actually working. I have an appointment with the doc in two we must continue to pray and keep good thoughts until then. Just wish the weather wasn't so darn cold. Damn!

Good news is that I am in a wonderful new rock 'n roll band since last fall. There is nothing better than singing in front of a large, live audience. Since they are waiting for my health to improve, we are on hiatus...and the guys are learning new tunes. We recorded a demo CD which can be heard at: (I hope you will check it out!!!)

Performing with my new band. Happier days ahead, we hope!

Wednesday, February 21, 2007

A New Year...A New Fight

Wow! I cannot believe it is ten months since I last added an entry. So much has happened that it would take me weeks to fill in the blanks. However, I promised myself that I would try to write regularly from now least to journal what has been going on and what the future may hold.

In a nutshell, the IVIG infusions were working very well last spring. I started to go into remission. I felt stronger and optimistic. But as the summer progressed, something just didn't seem right. Every time I went for my treatment, I had a negative reaction. It seemed as though my body was rejecting the gamma globulin.

During the year, my old UL band--Electro-Static--got together for a reunion show for my friend, Joan's, 50th birthday. It was a blast, but I looked so different from the prednisone that people who have known me for years did not recognize me. When I look back at the photos of me...I can't believe how heavy I was. But was a night I will never forget.

Sally and I did get away for a few days during the summer while Jarrett was away at camp. We drove down to Rehoboth Beach, DE to visit my cuz Mitch and his partner Michael. It was good to be away, but I was very nervous that my health would fail and we weren't near my docs.

I continued to swim almost every day in our heated pool, and went to physical therapy. Things were ok...not great...but I could deal! I even performed...yes...I played an original dance tune and sang...for a benefit concert in Bay Shore! What a high! I missed the applause! It took every bit of strength I could muster...but I did it and I was proud of myself.

Two weeks later, the shit hit the fan, as they say. Mom came to Long Island to drive me to Dr. G's office for my four days of treatment. By day two, September 20th, I felt horrible. The migraine's were unbearable. I was nauseas.It was the docs advice to skip a week and try my last two treatment the following week. Being the trooper that she is, Mom came back the following week and drove me back to see "T" for my infusion. That Tuesday I got thru it without an event. However, I had no idea what was going to happen to me the next day.

It was Wednesday, September 27th at 9:30. I arrived on-time for my infusion and was escorted to the backroom. Within a few minutes of starting the infusion, I didn't feel "right." My heart was racing and I felt nauseas. "T" called the doctor and he advised to slow things down and give me an injection to stop the queasy feeling. Since there was someone else in the room with me, "T" said I could move into the first room so it would be quiet and I could rest. The entire time I just knew I wasn't feeling good. I couldn't put my finger on it, but you just know when your body isn't happy!

As the day went on, my head started to pound. By this time I asked for more tylenol, but it didn't help. Then, around 2:30, all hell broke loose.

I could not control my heart was racing...I was jumping out of the lounge chair. My head was thrashing back, eyes rolling inside my head, I kept biting my tongue.

Just as this started to occur, my mom walked into the room and yelled for the nurse. I thought I was going to die. The nurse called over to my doctor and they immediately stopped the IVIG and gave me mass doses of benadryl and steroids.

For two and a half hours, I lay there...terrified that it would be my last day on earth. They made an emergency call to my partner and told her to come immediately. Mom was crying...I was trying to reassure her that I was ok, but I knew I wasn't. Between convulsions and crying, I just wanted it all to stop.

By 6 pm, I just lay in the lounge chair...thankful that I was still alive. Mom and Sally drove me home and all I wanted to do was sleep. It was one of the worst days of my life. I had escaped death. I was told NEVER to have the IVIG infusion again.

It seems that this isn't so unusual. Alot of people can only tolerate the drug for about a year...and it was exactly a year that I had started the entire process. So now what? Was I going to have to go back to square one again? Maybe. (more to come)