Tuesday, October 21, 2008

Crazy busy Monday

I awoke yesterday at 4:30 a.m. to the sound of little feet pitter pattering on the floor. Then came the whimpering and whining. “Go lie down!” I whined.

It was the morning of my anxiously-awaited clinic visit, when I would see if my low counts had rebounded and if the results of the bone marrow biopsy were back, including the chimerism, which would show the percentage of donor cells.

I had to drag myself out of bed and take the dog out in the darkness. She quickly did “both.”

Oh well, I thought. It’s better than finding a mess to clean up. (She sleeps in my room after her bout of “inappropriate urination” when she used to sleep in the kitchen.)

Back in bed, I set the alarm for 8; I needed to be at Dana-Farber for blood work no later than 1 p.m. before my 1:30 p.m. appointment with Melissa.

The phone rang at 8:15 a.m. It was Meryl wishing me good luck. A soothing voice was coming from the radio, which I set to NPR because I don’t want to be jarred awake. The soothing voice sometimes just lulls me back to sleep, but I still haven't managed to change my ways.

My mind was almost “hijacked” while I brushed my teeth. I pictured Melissa telling me bad news of varying sorts…such as, “The donor percentage has fallen,” or “Your counts are so low that Dr. Alyea wants you to be admitted to the hospital,” etc.

I tried the first line of defense: “This is just your mind jumping ahead. You have no reason to expect bad news.” This approach felt a little flimsy, so I went for a two-pronged approach. I pictured my platelets lining up to be counted like good soldiers…lots of good soldiers standing tall and proud. Those were the ones that were the farthest from normal last week, so I figured they needed the most help.

Then light-hearted me played a game with anxious-me. I pictured Melissa coming in and saying, “Dr. Alyea wants you to buy a new car,” or “Dr. Alyea says the moon is made of cheese.” Please don’t write me off as really crazy. It was just a little mind-game that reminded me I REALLY had no idea what Melissa would say and that I might as well stick to the here and now.

Read The New York Times (politics first), ate breakfast, reminded myself that time was a-passing and I was lollygagging, walked the dog, got dressed and picked jewelry to match. Put rings on, then took rings off, because last week I wore rings and my counts were down, so this week if I didn’t wear rings…OK…that’s bad, but I gave into it anyway. Gathered supplies (books, newspapers, lunch), grabbed coffee cup, headed towards door, then put it all down to quickly give myself one more shot of Neupogen to give my white blood cells a boost.

By now it was 11 and I was cutting it close. Dana-Farber and I are a good match in many ways. I’m always late and so are the nurses and doctors at the clinic. Actually there was hardly any traffic, and I got to the clinic about 12:45.

It’s always hard waiting for bone marrow biopsy results. It’s especially hard if your counts are not quite where they should be. On the drive into Boston, I tried to breathe into a bubble of calm around me. I did the same when I arrived at the clinic. And in the waiting room, so as not to suffer from wandering-mind-syndrome, I dove right into the parts of the Times that I hadn’t read. These things actually worked pretty well.

After all of my projecting, the full biopsy report wasn’t back yet. Melissa reiterated that the part that was in looked good. My platelets were still really low, but at least they had gone up (to 45) and not down. The white count, due to the shots, was normal, at 5.7. Surprisingly, my hematrocrit was down to 24.8. I really had been feeling fine, and even had a good doubles game on Saturday. I guess I was running on reserve power.

So, it was time for a transfusion. About mid-way through the first bag, I developed hives, which necessitated a dose of intravenous Benadryl. The hives calmed down, but, as Queen of Rashes, I was not surprised when I developed a few more hives during the second bag, necessitating and more Benadryl.

I could barely keep my eyes open; driving home was now out of the question. I called Diane, who came and rescued me. By then it was dark out and we were basically the last ones out. David (her husband) dropped her off and she drove me to her house (nearby in Newton), where I spent the night.

My techniques had served me well during the long day, but I was exhausted, and the Benadryl put an end to the chattering for the night.


Anonymous said...

I know what you mean. Sometimes I think that if I can catch the screen door before it slams shut, Arielle will have a good day, or if my car can make it to my parking space at work before the end of the song, Collin's cold will go away. It's good to know that someone else does the same thing even though it sounds crazy!

PJ said...

I read this on the edge of my seat, wanting to skip ahead to the test results, but forcing myself to "experience" the anxious waiting. What a day you had.

It seems like you're turning the corner count-wise. Did they tell you to stop the neupogen? I hope you have a nice calm day. You deserve it.

Ronni Gordon said...

To answer PJ, yes, they did tell me to stop the neupogen. I really hate to do it. It kind of felt like my security blanket, a guarantee that my white count would go up. Oh well. Must follow doctors' orders.

Anonymous said...

I was really (REALLY) happy to see post today, after checking yesterday. I had to skip to bottom, but was pretty convinced it was going to be okay. While I hate your (and my) situation, I always enjoy reading the way you capture it. Interesting to reflect on your insights on self-calming vs my own experience at self-escalation.

Unknown said...

Hey Ronni,

I'm a new reader--found your blog through the LLS newsletter. Add me to your list of fans. My son was diagnosed with AML in March 2005 at age 16. It's been a wild ride, so your story really resonates with me. He's currently at home with chronic GVHD.

I appreciated hearing about your thoughts and attempts at distraction while awaiting blood counts. I like the idea of imagining the medical folks saying ridiculous things. Better than those worst-case scenarios!

Susan C said...

Like PJ, I was on the edge of my seat reading this but didn't want to skip ahead.

I'm the same way with post-scan appointments. I always play out in my mind the worst and best case scenarios and how I will react. There's always a lot of hugging going on - comfort hugging if the news is bad and joyful hugging for good news. But I will have to start playing out the silly possibilities too.

"We have received a report from Home Depot. You have abused their dead plant return policy and will not be allowed to shop there any more." That's my greatest fear!

susiegb said...

Goodness - you really wanted to keep us all in suspense with that post didn't you Ronnie! I'm so glad it was all good news to date, though I really was expecting that to be the case.

Maybe next time you can put the 'good news' at the beginning of the post?!! :)

Anonymous said...

I am new to this reading blogs and all, but have had AML since July 08. 3 more rounds of chemo ahead of me, not sure what after that..I'll be looking over the comments & blogs for other survivor comments...I need the support

Nelle said...

I think anyone going for tests can relate to this. I still have a special handkerchief that was annointed with a healing oil. That was attached to my son's pillow and the following day he went into a late remission. We all have our good luck symbols or procedures. I am now arranging to have some skin cancer removed and Friday went through the laborious pre op visit.