Friday, December 12, 2008

Transfusions and rashes and shakes, oh my!

Due to my low counts on Monday, I was anxious on my ride into Boston yesterday. Always on the lookout for signs, I was happy to hear a radio station playing the Grateful Dead singing, “I will get by…I will survive.” When that was over, I switched to another station, only to hear a deep male voice threatening, “Your time is running out!” Waaaaaaa. If you’re going to stay open to signs, you need to learn how to filter out the bad (and just plain silly) from the good. I listened to the rest of the message, which was about a last chance to contribute to a PBS fund drive. The man was NOT talking to me. I got a grip. In my head, I switched back to the Grateful Dead: “I will get by, I will get by, I will get by, I will survive.”

I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me.

This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

I managed to avoid a bone marrow biopsy; Melissa relayed Dr. Alyea’s conviction that all this craziness with the counts is a medication issue. (Sigh of relief here.)

On to the infusion room. I was pre-medicated with Tylenol and Benadryl to head off drug reactions, and M.J., my nurse in the infusion room, started the platelets first. Soon afterwards, I started breaking out in hives. M.J. added another 25 mg. of Benadryl. Then I started shaking, my teeth chattering like I was out in the freezing cold instead of being huddled under a blanket inside. They call this rigoring. Melissa came in and put in an order for IV Demerol. I remembered that Demerol had stopped the shaking when I got it in the hospital a few times when I was spiking a fever. Thankfully, the first 25 mg. of Demerol stopped the rigors yesterday.

When Diane came to rescue me (again) I told her about the shakes, which in my mind were more connected to fevers than to platelets. She reminded me that I had rigored after platelets countless times in the hospital.

Somehow I had blocked, or partially blocked, the memories of all those discussions about what could be done to prevent the platelet reaction or to best deal with it when it happened. I wondered about the source of this forgetfulness. Was it (a) chemo brain or encroaching dementia, (b) a matter of low blood flow to my brain (c) the two Benadryls or (d) the capability of the mind to place a haze over some of our worst memories?

Diane drove me to her house, where I fell asleep sitting up a couple of times until I got myself up to bed. While sitting on the edge of the bed, I watched our second cousin, Rabbi Rick Brody, try to win a $1 million Hanukkah prize on the show, “Are You Smarter Than a Fifth Grader?” Our cousin Betsy had e-mailed us a reminder to watch the show, which had been taped over the summer. Ricky, who lives in California, is 34, married and a father. To me he is still one of the younger kids around the holiday table.

I remember catching this silly show when it first came out, and thinking it was never going to make it. Shows you how smart I am.

Yale-educated rabbi (Rick) was followed by a priest (also Ivy League-educated); host Jeff Foxworthy called it “The rabbi vs. the reverend vs. the redneck.” Later, I found the details of Rick’s appearance on a blog, Game Show Kingdom, (who knew?) where, if you’re interested, you can scroll down quite a ways to read the questions and answers from last night's show. 

Rick got stumped on a question from fifth grade history: “In the 1850s, the U.S. bought 30,000 square miles of land as part of the Gadsen Purhcase. The land is now part of two U.S. states. Name them both.”

Rick did not get the right answer, which is Arizona and New Mexico.

Most of us probably wouldn’t know that answer, but, whatever. He still earned $25,000 and the chance to say into the camera, “I am NOT smarter than a fifth grader.”

While thinking about how strange this all was, I keeled over and fell asleep with my head at the bottom of the bed. I eventually straightened myself out, but I slept badly, annoyed by the sense that my skin was breaking out even more than it had during the transfusion. By morning, I had a full-blown, VERY ITCHY, rash.

I ended up returning to the clinic, where I saw Melissa, who conferred with Dr. Alyea. He said it was probably a continuing reaction to the platelets, and he prescribed a short course of steroids along with Atarax (hydroxyzine), which works like Benadryl only better.

Later I spoke on the phone with Tami, who sympathized. “It’s like you’re going two steps forward and not really two steps backwards, but more like two steps sideways,” she said. Well spoken, Tami. I think a lot of people know the feeling.

Sorry this post is so long. It’s been a long two days. I return to the clinic on Monday.


Anonymous said...

Thinking of you, Ronni! Courage! Onwards and sideways! With love from your blog-phobic-friend

PJ said...

Ugh, what a day. Sounds like you handled it with aplomb. Try to stay out of trouble!

One Mother with Cancer said...

I hope things start going better for you, just hang in there.

Thinking of you...

Baby Bird said...

It's so amazing how many of us can relate to what you are going through. I am so sorry. And that is why we all are here to help.

So many things you said rang such a loud bell. Forgetting bad things that happened in the hospital was always the case for me. So often friends would say, "Don't you remember that you . . . "

And most of all, songs on the radio start to have direct meaning to us. I still listen so intently to lyrics sometimes and know that they are singing right to me.

Patty said...

Ronni - the two steps sideways is spot on. I am thinking of you. call me.

CLL Spouse said...

No apologies necessary. A lot of "connecting points" here and I'm glad you wrote all of them.

a, b, c or d.....a familiar thought-path here!

I hope Sunday is a day well spent and that you get to do at least one thing that gives you a feeling of progress.

Nelle said...

I never had that reaction but I saw others have it numerous times. You know nothing knocks me out like benadryl. One doctor told me it has a high alchohol content in it. Huh? My mind has lapses and I often wonder if it's due to meds, stress or age. Either way I can't help it. lol
That was interesting about your cousin. I can't answer many of the questions they get asked. However when it comes to medical knowledge, sure I can beat them hands down!
Wishing you better counts soon!

susiegb said...

2 steps sideways - oh yes, I know that feeling! But goodness Ronni, your're really going through it. I've never had a reaction to platelets. The only thing I've had a reaction to was Mabthera (Rituxin in the US) but that was only the first time and just a small amount of teeth chattering etc.

Hope you have a few giant's steps in the forward direction coming your way very soon!!

Anonymous said...

I just wanted to let you know that this product helped me and my family so much - there have been studies in the lab that the Acai that is in Monavie seeks out and destroys cultured human cancer cells. Here is the study It has really helped my father-in-law who has leukemia. We get ours at I wish you the best of luck - this is a disease you can beat!

Susan C said...

Gee, if it's not one thing it's two others. I hope you had a restful, rash-free weekend.

And I guess I'm not smarter than a fifth grader either.

Anonymous said...


I am back from Seattle and I checked in on you as soon as I got back. I am so sorry that Friday was such a messy tough day. None of !
that sounds fun but once again you were able to write about it ad make us laugh a little on this side of things.
I know you head back to the clinic tomorrow so I am sending positive vibes your way and healing thoughts. You are doing great and leading a wonderful job staying present and keepin on keepin on!!

Laurie said...

I am writing to ask if you would be willing in to include a link to our new website ( ) on your blog.
This foundation was started in 2007 after my sister lost her eldest son, Ian, due to complications stemming from childhood leukemia.
The purpose of the foundation is development of, and raising public awareness about, cutting-edge, targeted therapies for childhood cancer, so that the treatment of childhood cancer will be gentler and more tolerable

Please feel free to contact me if you should have any questions about ICIC.
Many thanks,

Laurie Beaty

PS... my son is a student in COM at BU :)