Monday, February 1, 2010

- Vasculitis Revisited

Well, wasn't that a fun weekend! In case you don't know what I did, I went on a women's retreat with my favorite-church-in-the-whole-world, Westview Bible Church. We were a bunch of 96 or so C-R-A-Z-Y ladies holed up in a convent / conference center with anything and everything but silence as our guide.

Okay, so our madcap group of ladies didn't look exactly like this (does everyone know what "madcap" means? I know not everyone reading this has English as a first language . . . it means "wildly or heedlessly impulsive; reckless; rash: as in, a madcap scheme").

Our clothes are slightly more modern than in this picture. And our hair, too. But this photo from the internet kinda grabbed me so I decided to throw it on here for laughs. Ha!

Anyways, there we were, 90+ women between the ages of 35 and who-knows-what, trying to behave like civilized human beings. It's not easy, you know. Many of us never had a proper upbringing so we never really learned how to act in a socially appropriate way. But we did our best. 

We had some lovely music and we worshiped God together, and we listened to our sweetie-pie speaker Sue MacDonald; we ate chocolate and met in small groups, we prayed and we laughed and generally speaking, just had a marvelous time together as we always do every year in the last weekend of January. 

We chattered like hens at breakfast, lunch and dinner, consistently annoyed the cleanup crew by overstaying our welcome at the dining room tables long after the meals were finished (sorreee!), and generally drowned out any and all other sounds within 10 miles of the place.

And then, on Saturday night, we had our talent show. And wasn't it great!!! Amazing!!! We have some very talented gals in our midst. 

We had a group of 4 ladies over 50 doing a wonderful rendition of Money Money Money by Abba, from the Mama Mia! movie . . . boy, were they dolled up! Boas and everything!

Whoo-hoo, wish their husbands could've seen 'em! Then Peggy did her skit with Cindy. . . Peggy was "Noah" (as in Noah-and-the-ark-Noah) and Cindy was God (as in God-Who-created-the-world God).

I don't know that Cindy was totally convincing as God since her voice isn't very deep and she was hiding behind the stage curtain; you could see her shape throughout the entire skit, so you could tell it wasn't really God at all (unless you think that God hides behind stage curtains, is about 5'5", and very, very slim.) But Peggy was very convincing as Noah.

Vanessa wowed everybody with her 'fro wig & her four-inch (or were they five?) red platform shoes covered in sparkles, and she belted out an amazing song & had to do two encores!

And of course, I had to get up there and sing "Menopause". It's kind of an annual ritual, and they haven't chased me off the stage yet for singing it a gazillion times this century, so I guess I can still get away with it.

After the Talent Show finished at 11 pm (it finishes later and later every year!), most Reasonable People went up to bed, and the rest of us stayed downstairs and giggled hysterically at Karen K's stories until around 1:30 am. 

By the way, this is what the sunset looks like just outside the retreat center - nice, eh?

Anyways, when that lot had gone off to bed, I managed to find a covert party still happening upstairs and hung out there for awhile. Keep in mind that I had slept through two out of the three teaching parts over the weekend, as I was feeling pretty wiped from the chemo. That made it a bit easier to stay awake until about two o'clock.

And that's when I discovered IT. I was visiting the potty one last time before going to bed, and that's when I saw THE SPOTS. 

Yep, those nasty red spots on my upper legs. Gasping to myself (because most other Reasonable People had gone to bed, so I couldn't gasp for the benefit of anyone else), I pulled up my pantlegs and sure enough, my lower legs were covered in that nasty rash I had back in December. It was the Return of the Small Vessel Vasculitis. Drat!!

Now, for those of you who weren't yet fervent readers of this blog back in December 2009, I will clue you in: I had a nasty case of what the doctors diagnosed as Small Vessel Vasculitis. It manifests as red blotches all over the legs, followed by swollen joints which feel like a very painful, severe form of arthritis. 

It happened 3 weeks after my first chemo, and here it was happening again, 3 weeks after my second chemo. Well, at least my body is responding in somewhat of a predictable manner.

The first time it happened, my Oncologist's theory was that the vasculitis was a direct reaction to my chemo, but he had no way of knowing for sure. He'd never seen that reaction and neither had any of his colleagues . . . they were mystified & could find no precedent when they researched it. Don't I love being unique! 

My chemo treatments were suspended for around a month while he  did further research & consulted with other Oncologists. 

When he could find nothing conclusive, he cautiously resumed my chemo treatment on January 11th when I went in for my second round, almost a month overdue. My instructions were that if the vasculitis flared up again, I was to go immediately to Emergency, get my blood tested, and get them to give me Prednisone again, which clears everything up in about a week or two (and hopefully this time around, it'll prevent that arthritis from kicking in.)

And then we'd know for sure that this chemo I'm on is causing the reaction and I'd have to be put on another type of chemo.

So . . . I packed up my bags at 2:15 am, with the help of some dear gals who were as crazy as I am and hadn't hit the hay yet. Two of them went out in the bitter cold to fetch my car from the parking lot, and delivered my car to the door, helped me load the car, and hugged me farewell as I drove off into the night to the Jewish General. One of them wanted to go with me, but I convinced her that it really wasn't necessary.

By 3 am, the Jewish General nursie was taking my blood and giving me my "drugs". I had a nice little nap on the Emergency room bed while I waited for the results, and at 5:30 am, the doctor woke me up to tell me my bloods were normal and I could go home. 

So even though some weird reaction is happening in my body, my blood is normal. Go figure.

There you go. You're up to speed with my ongoing saga and my Very Dramatic Soap Opera, "The Young and the Breastless". 

I am off to bed now, and tomorrow morning I will wake up at 7 am, leave here around 8:15 am, and get to the hospital for 9 am. I will have an EKG for the heart study to make sure my heart has not been damaged so far by the two rounds of chemo (which is cardio-toxic).

I will go up and see Dr. Cohen, and show him my yukky-looking legs. He will shake his head and look very troubled, and then he'll decide what the heck he's gonna recommend next. For sure, he'll take me off of the AC chemo that I'm on. I'm pretty sure I won't get Chemo #3 tomorrow . . . it'll be delayed a week or two while he figures out what to do. He won't want me receiving any more chemo until this vasculitis clears up. 

And then . . . I'll come home and have a nap! And Adventures With Wendy will continue!

Good night!!!

Love, Wendy


  1. Hi Wen,

    Hope Dr. Cohen finds that it really is nothing...keep me in the loop.


  2. What a brave woman you are! You are so loved! Thanks for your song last night. You certainly have a spirit of JOY!


  3. So sorry to hear about that dreaded vaculitis coming back. You sure didn't need that again! My prayers are constantly with you. God bless!
    Love, Janice

  4. Wendy you have endured so much already. What next? Thank God for his strength and that he answers our prayers. We all wish you the best recovery from this nasty rash once again and I believe Dr. Cohen and his collegues will figure all this out and get you the right treatment. You are so strong and encourage so many other women. Thank you for your kind spirit, your great laughter and your talent of your beautiful singing voice. It was a joy to hear you sing your song. I wish you could have done some more for us. We had such a blast! Thanks for the memories. Your breast friend, Wendy G.

  5. The Young and the Breastless! You are too funny. Praying for you always xo

  6. Glad you had a blast! You can always count on Christian women for that, eh? Crazy bunch!

    Praying for you about this new bout of red spots...


  7. Hi Wendy,

    Your story would make me cry if it were not that funny! Keep up the good spirits and you will see the light at the end of the tunnel. I'm glad the AC chemo did not cause you too many side effects... apart from SVV, but the Adriamycin is not called the "Red Devil" for nothing and many women have to abandon it after a few cycles.

    What is important is that you start Herceptin asap. This drug is a killer, it shrinks tumors and prevents cancer cells from getting food to grow and replicate. And what about your immune system? Didn't your doctor prescribe something like Neupogen to prevent the white blood cells from dropping? Could that help in fighting SVV??

    Keep up the good fight! Sweet dreams!