Tuesday, December 16, 2008

Spending some uneasy time in limbo

My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels.

I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town.

It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

There is also the possibility that some of my donor cells are going away, but the chimerism evaluating the percentage of donor cells is not back yet. If that happens, there are things that can be done. I am trying not to go there, although, as I have written before, I am spooked by the timing, since I was just about where I am now – six months out – when I lost the graft. I also know the unlikelihood of being hit by the same bus in the same spot. I need to keep believing it.

Over the weekend I was pretty OCD-ish in trying to figure out if my counts might be coming back. I checked and rechecked my black and blue marks and my Petechiae, the pinpoint dots that are a sign of low platelets. Were those new marks or old ones? I looked at a red mark on my gum and wondered if it was blood or if I had food stuck in my teeth. I started to go after it with my toothbrush, but I made myself stop. All I need is to cut my gum and start bleeding.

I am not a professional, but I imagine that this type of checking is a way of trying to feel in control of a situation that is not in our control. Kind of like when you are waiting for an e-mail from that special someone who hasn’t written or called in days. You try to distract yourself, but you can’t stop from clicking on your e-mail. Click, click, click…you could drive yourself crazy.

In times of anxious waiting, I know all the “tricks.” Change your focus. Take care of the things you can control, and give the rest up. Put on comfortable clothes. Do some gentle yoga. Stretch. Read. Take a walk. Breathe. Listen to music. Call someone. Think healing thoughts. Those are just some of the things I do; I'm sure other people have other things.

Still, when your mind works a certain way, it’s hard. It takes practice, and a nudge from self when my mind wanders off. Maybe some of us could form a chapter of ruminators anonymous.

14 comments:

Anonymous said...

First of all, your counts are "off" but YOU are normal. You have every right to think, fear, and "future trip". I think anyone who has gone through a diagnose like we have are always very nervous when counts are too high or low. I get freaked out when the counts rise!

You are on many medications and those too might impact your counts.

I can not sit still when waiting for results- so do whatever works for you. Please update and I am sending healing thoughts your way!
xo-Lea

PJ said...

Sign me up for the ruminators.

Ronni, you've had so many curve balls thrown at you, you could be hired as a Major League catcher. It's good you're writing about these challenges. I hope it helps you sort through it all.

Dang, I'm mad at your viruses.

I'm here if you need me.

Glenn Gleason said...

Thanks for your insights and comments. I think your blog is amazing. Not having gone through a transplant - it is hard for me to relate to some of things you are struggling with right now, but I can relate to the fear of the unknown. Waiting for the numbers, running symptoms through your head all the while trying to be the strong and stoic type for everyone who follows your efforts and admires your courage. You almost want to collapse at times from the shifting sands around you. I gained a lot of strength from reading a new earth and embracing the present. Knowing it was the only thing I could fully control - it gave me the grace I needed to move from day to day.

Keep writing, sharing and living - you are having more of an impact than you know.

All the best - Glenn Gleason

Ann said...

It sounds like you know what you need to do. That being said, it doesn't make it any easier to swallow. Like Lea, I freak out when my counts go up, since that's how I relapsed. I try to take my own advice and relax, but anxiety has a way of manifesting itself in strange ways.
You'll come through this. Until those numbers start behaving, know that you have an army of people thinking of you and sending positive vibes your way.

Nelle said...

Ronni
Sometimes it is so very hard to distract oneself from these thoughts. I find music to be a great distraction. Perhaps focusing on a list of music you would want for a new IPOD could help distract you a bit now? I have old movies that are favorites I sometimes use to distract myself. Thinking of you and sending positive vibes your way until your counts go back up....

tamar said...

I'd like to join the ruminators group too!!

Thanks for the posts - I really like reading them, a window to what you're thinking and a way to keep in touch between phone calls.
TS

CLL Spouse said...

"It takes practice..." You said a mouthful with those three words.

Keeping the focus where it needs to be and where it's most helpful to be, not in denial of the very real possibilities but in spite of them, is totally akin to conditioning a muscle. It's a discipline that requires intentionality.

It may even be a high art form! :-)

I nod my way through your posts, BTW.

I pray you are virus-free very soon and your counts are where they should be.

Susan S said...

I'm very hopeful that this is a CMV virus/medication vicious cycle situation - remember that your chimerism (SIC) test results were very good just recently. I remember my doctor saying to me "don't cross the bridge until you get there" - it's funny how these sayings don't mean much until you are in a particular situation. Now that I take piano lessons (no talent, no skill!), I also know now what that saying "marching to the beat of your own drummer means" too! I have found piano to be a good way to distract me from ruminating in general - but test results are in their own league of anxiety-producing agents. Wishing some good test results your way soon with all my heart. Susan

susiegb said...

I really think that the loss of control is one of the worst things about having a serious disease. I mean, we mostly don't have control of our lives anyway, but we think we do, act as though we do. And that truth is really brought into focus when you are waiting for results, or suddenly being told you can't do this, or must do that by your doctor!

I too probably need to join your ruminators group! I do try and distract my mind with movies (DVDs), friends, music, just occupying my thoughts etc.

I've got my fingers crossed for you and hope those dreary viruses get killed off very soon and leave you and your new cells back to getting closer and stronger!

Patty said...

Hi Ronni - One day at a time right. You know what you know and that is the present moment! Although you know I too could use the ruminator group!

Anonymous said...

Hey Ronni,

I find it reassuring that you still walk Maddie two miles even though your numbers aren't as stellar as we'd all like them to be. I know you say you obsess over things and have trouble keeping your thoughts positive, but I will say that even though your entries currently talk of lower numbers, they still have a strong and positive voice throughout... I think that's why people love this blog, there's a whole lot of omph in here!

mieke

Anonymous said...

Sorry your counts are down, Ronni. I would send you some of my white blood cells but UPS has this phobia about shipping bodily fluids.

Healthy Holidays!

Mike Hamel said...

Ronni, the previous comment was mine; I didn't mean to post it anonymously.

Ronni Gordon said...

Thanks everyone for your support.

And thanks Mike for the offer of white blood cells. Too bad we can't form a group where the people with the high WBC can't just give some cells to the people with the low counts. This would solve everyone's problems nicely!