Thursday, August 16, 2007

SPECTACULAR

According to the American Heritage Dictionary, the word "spectacular" is an adjective meaning "of the nature of a spectacle; impressive or sensational."

That was the one word that world-renowned rheumatologist Dr. Harry Spiera repeated over and over again yesterday in his New York City office, as he described my progress!

It has been a month since my last Rituxan treatment, and according to Dr. Spiera, he doesn't believe I will need another one for a year or more from now! Wouldn't that be a miracle?

I am feeling much better, my strength is coming back, but my lower left hip joint and neck flexers still need improvement. Even though I am extremely exhausted/fatigued all the time, his thought process on that is to begin a serious daily exercise routine.

The two most important things I can do for myself at this moment are swimming and walking.

He was concerned with my horrible reaction to the chemo and the fact that I have been getting upper respiratory infections on a regular basis. However, overall he is amazed!

The fact that Rituxan is still not approved by the FDA for my disease process is a sin. And the doctor said that with results like mine, it will be approved much sooner. He plans on writing my story and submitting it to them as proof!

I am extremely thrilled, but still cautious. Things can change on a dime, but I will continue to fight and do exactly what the doctor ordered!

It's spectacular!

Sunday, August 12, 2007

Progress Takes Time

Well, well, well! The summer is slipping by so quickly!

Jarrett leaves for his last two weeks of camp tomorrow morning, and next Saturday is our annual party. Lots to do beforehand, but it should be a blast.

Had a busy week overall. Jarrett and I drove out to New Jersey to see Mom, and my Godson joined us for lunch. The two boys ended up playing Guitar Hero. Seems most of the kids are addicted to that new Playstation game. I must admit, it is alot of fun!

It is wonderful to see my two favorite boys in the whole world hanging out together. It truly makes my heart smile. I am so blessed to have both of them in my life...my newest son and my godson. I love them both with all my heart and soul.

I drove Jarrett and his friend, Garry, to Inline-1 out in Mt. Sinai this week. It is the largest skatepark in New York. They had a blast, but it was the hottest day of the year. I guess I am a super Mom to have stayed almost five hours waiting and watching in the heat!

It was quite fascinating to watch all those talented kids on their boards spinning and flying through the air. That was one sport I never had an interest in. I couldn't keep my balance, except on rollerskates!

Last night we had seats in the suite at Ducks Stadium. It was nice, but we were sure glad to be inside. It was freezing out...in the 50s during game time! Dawn invited us to use the HIP suite--La, De, Da!!!

I have been receiving compliments all week about how good I am looking. When I looked into the mirror today, I actually smiled. I am feeling so much stronger and I am thinner! But I still must take it a day at a time.
Now that Sally and I will be alone for the next two weeks, it is time to discuss our wedding plans...get down to business--as they say! I cannot believe we are finally tying the knot! Hooray. First we need a date and then we can look for a place to hold it.
Enough for now. I see Dr. Spiera on Tuesday in Manhattan. I am curious to see how he thinks I am progressing. Thank God my insurance company paid for the entire chemo treatment last month...one less thing to worry about. Money is so tight again...but as long as my health is improving, that is what counts the most.
The beat goes on...

Wednesday, August 01, 2007

The Eighth Month Begins!

It's August 1st. The summer is flying by and we are in the beginning of a heatwave.

Once again I was lax in keeping up with this blog. After my second treatment, I had a very difficult time...but each day seems to get a bit better. I am still quite exhausted, and have trouble getting out of bed each day.

Sally and I finally got out of town for a few days last week. We drove two hours to New Hope, Pennsylvania and stayed at a quaint B & B. I really felt horrible physically, but I knew that we both needed some time away.

We walked around town, had some wonderful meals in Lambertville and New Hope, took a ferry ride down the Delaware, and best of all...we ordered wedding bands! We fell in love with them, and will probably wear them before we actually have a ceremony. If NYS doesn't pass a law within the next year so that we can legally be united, we decided we'll have a commitment ceremony with our close friends and family by our side.

The ferry ride along the Delaware was so peaceful. The tour guide gave us a history lesson about George Washington crossing the Delaware. In fact, we rode in that exact location where he crossed! It was pretty cool!!

Wildlife was all around us...and it was an hour I will never forget!

Friday night we went to see my friend Joan and her band, Flashpoint, play at a local church carnival. Most of the guys were former members of my old band, Electro-Static. I miss them immensely! They were so excited to see me!

Then this past Saturday night, my band had a gig in Rego Park, Queens. It was great to see all the guys...it had been over a month and a half! They couldn't believe how much I had changed...especially the weight loss.

It felt wonderful to get up and sing again, even though there were many moments that I didn't think I could continue. But my love of the music and my friends' support got me through the evening. I even surprised everyone in the second set when I pulled out a guitar and played along!

Jarrett gets home from camp this weekend, and doesn't go back for a week. I took care of all his school paperwork today...doing the name change thing. I just need to find out when tryouts begin for cross country so that he doesn't miss them!

Well, I think I should go out and swim now. It is around 90 degrees and I haven't been in the pool for weeks.

Stay cool!