All three kids were home on Thursday. Ben came up from New Jersey for a day and a dinner, and it was great having all three home at once. The talk was constant and interesting, touching on baseball (of course), politics, college (where Katie should go) and life in general.
We had a feast for dinner. Ben cooked some "burgers" and "dogs" on the grill, Joe made some baked chicken wings, baked chicken legs and potatoes, and Katie made salad. Then we sat down and toasted to family and to health and ate the good food.
Ben left early Friday morning, so it was a short visit, but a good one. We had spent a lot of time Thursday just sitting around the kitchen table, wading through a stack of newspapers, talking and drinking coffee. I actually saw him a little on Wednesday night too: Joe drove me to Boston for my clinic visit, but he couldn't stay because he had a baseball game.
Ben happened to have Red Sox tickets, so I took a cab to Diane's and he picked me up after the game. We got home around 1 and then talked to Joe a little. The late night compounded my getting-up problem, but I didn't have much to do the next day, so I didn't really mind.
As for my clinic visit Wednesday, my platelets were back down at 8. My hematocrit was down to 23 – I knew it was low because I had been huffing and puffing on my walk – but my white count was steady at 5.2.
I got two bags of platelets and two bags of blood, clocking in seven-and-a-half hours. The Benadryl, which I always get with Tylenol before a transfusion, really knocked me out this time, even though they check your temperature and blood pressure every 15 minutes. I just kept opening my eyes and konking out.
You get addicted to your counts and are never happy when they are low. I keep thinking there's something bad lurking behind these low counts, but Melissa came into the infusion room and said Dr. Alyea had seen the numbers and wasn't concerned.
I need to go with that, but it's hard to let it all go when I still have clinic visits every five days or so. Today, during my usual drawn-out effort to get out of bed, I found myself studying the small black and blue mark and the Petechiae (tiny red dots that signal low platelet count) around my knee. Were these from before the last transfusion or after it? Were my platelets plummeting?
No way to know until Monday. So, I tell myself for the umpteenth time, try not to think about it. Enjoy the kids. It's easy to do. I love those kids!
8 comments:
Ronni.... you sound so good. It is great to have you back in town.. I would love to join you for a walk. Michelle B
Your children do sound lovely. Plowing through a stack of news papers with my child would be a fantasy morning.
Having nice times with your kids is what helps keep you plugging along. The platelets and rbc's will eventually kick in. Be patient, and love those kids!
Sounds like a wonderful weekend. I didn't realize Ben lived in Jersey. That's a ride. We used to ride to my mother-in-law's in RI every few months but this year it just hasn't been possible. Time off my job is so hard to get and I end up using it all for medical visits. By the way, my husband is a huge Sox fan!
I'm glad you had such a nice time with your children and that they could help take your mind off of things.
Sending good thoughts your way!
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Take care, Dennis
Enjoy those grown children every moment you can. (Note: this mantra has absolutely nothing to do with cancer; it always applies).
As for the "addiction" to blood counts, the tendency to focus on them is totally understandable. After all, you can measure them in a way you can't measure your energy or wellness. Maybe part of you wants to know, "Am I okay? Am I getting better? How much better am I going to get?"
If you can measure it, you have a sense of "knowing" how you are. If you have a series of measurements, you have a sense of "knowing" what's coming.
Of course, cancer/transplant didn't make your life uncertain; it just exposed the uncertainty of life.
Maybe you can disempower the counts a bit by creating boundaries around what they tell you. Yes, they tell you if you need a transfusion now. Yes, they tell you indirectly how your marrow is holding up. But then, maybe, leave it at that. That's all they tell you.
If this helps, great. If not, delete.
With hope, Wendy
Dearest Runder-Mother,
I second Wendy's advice...and listen to Dr. Alyea
(hear ye, hear ye) --
it is totally normal to play the mindgame of petechiae --
(petty minutiae, -- which many of us have, but which don't mean anything for most)
remember, and know, that you are getting stronger and stronger,
and this all is par for the course...of healing...
and yes, you've got the greatest kids! -- Red Sox and all,
xop,
yankee-pam...
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