Spinning

The past couple weeks have been challenging. Real life, non-medical stuff, has been stressful, and I have been feeling an underlying "something's not right" feeling that I've tried to ignore, but haven't been able to shake.

I get routine lab work drawn last week, and they come back with a white blood cell count of 1.8, which roughly translates to "you're a magnet for infections and now have no ability to fight them...Get a neupogen shot NOW." 


Neupogen is a shot I've been given a few times for low WBC count. It stimulates bone marrow to quickly produce more white blood cells to raise dangerously low counts up very quickly. For me, this causes intense bone pain for about 2 days following the injection, the kind of pain that Percocet, switching positions, laying down, massage or heat/cold can't do anything to subside. 

I embrace the shot, despite the pending pain, understanding its necessity. I receive the shot on Wednesday, less than 24 hours before boarding a plane for a six hour flight with my kids to visit my father. 

Ugh. Relatively intolerable pain, inability to take recommended pain meds, cramped space on a plane, and an anxious six-year-old with a monitor that doesn't work. It is a very trying day, and I am so grateful when the bone pain diminishes earlier than I expect on Friday morning instead of Friday afternoon.

Feeling a little elated, I check my email and discover an email from my nurse...cold sweat on a sunny California vacation day...she lets me know that my recent labs reveal that I have been diagnosed with another lifelong virus...CMV.

CMV? Huh? I look it up. 50-80% of adults have it, almost all are asymptomatic, most people don't know they've got it, blah, blah, blah....but can be dangerous to people with compromised immune systems. One site refers to CMV as the single most important infection for transplant patients. Another touts:

CMV is an immunomodulatory virus, and its effects on the host include enhanced susceptibility to opportunistic infections and, probably, chronic allograft dysfunction. Another indirect effect is acute and/or chronic allograft injury and dysfunction

I am disappointed, to say the least. More accurately, I am scared and anxious and overwhelmed and angry about the future, the unknown. I feel my paranoia about medical outcomes becoming a way of life, not a temporary detour on my road to liberation.

I can't find much on treatment. I check support groups and understand that transplant patients with CMV feel

• Fatigued...check
• Gastrointestinal issues...check
• Muscle Aches...check
• Fever/night sweats...check

This is all the stuff I've been pushing through. None of it stops me in my tracks, it has been draining on me for a couple weeks. I haven't exercised, I haven't eaten consistently, I haven't felt badly enough to give in, but haven't felt good enough to do anything more than I've had to.

I'll have to wait to talk to my nurse and my doctor. Without their input, I'm spinning my wheels trying to solve a mystery without any clues, like I'm Velma stuck in a Scooby Doo episode that never gets past the first commercial, before Daphne trips over the obvious clue and before Scooby sniffs out the Scooby Snacks. I really want to fast forward to the end where Fred and his ascot reveal everything.

Surprise Inspiration

Today has been challenging.

Bone pain is difficult to describe. It hurts from deep inside, aches and its unreachable. Massage and heat make it worse, laying still is not an option and moving around isn't helpful.

It's simply present and not going anywhere. The pain medication I'm on makes me a little loopy, light headed and just yucky. My head gets dizzy with standing and I feel the weight of a headache putting my head down.

The agitated, unable to be still or comfortable feeling is the kicker, though. I'm tired but unable to rest. I keep getting up, walking around in hopes of relief...it hasn't come yet. 

I try to cheer myself with a favorite treat, dried mangoes. Trying to apply enough pressure to chew mangoes makes my jaw ache in a way that makes my reward feel more like punishment.

And...my daughter is sick! Vomiting and fever all morning. She looks horrible and has been unable to keep anything down. I do not feel especially maternal caring for her, masked and gloved and completely aware of desperately trying to care for her and keep my distance at the same time.  

~.      ~.      ~.      ~.      ~.      ~.      ~.      ~.      ~.  

She's been over an hour now with water and pepto staying down. Her fever's not gone, but no longer increasing. We're taking a positive turn...

Watching her reminds me she's watching me. 
She's got a 24 hour bug and so do I. 
She's  going to get through and so am I.
This moment will pass, her inspiration will remain. 

This Too Shall Pass

This morning, I went back to clinic. Well, I tried to, but on the way, I popped a tire, found out my spare wasn't functional, got towed, had two tires replaced, got the car aligned and finally left the mechanic's with a much lighter wallet three hours after my scheduled clinic appointment

I knew i had to go in. My white blood count is still dangerously low at 1.6...ugh.  Linda instructed me to ALWAYS wear a mask in public until its back over 2.5.  WBC's fight off infection and without a safe WBC count level, I am at risk for infection all the time and have no ability to fight it off.

I am in need of a neupogen shot to stimulate my bone marrow to produce white blood cells. I received this shot in hospital on my previous stay and the bone pain that ensued was unbelievable.  I was treated with a morphine derivative and Percocet just to get through.

I am not looking forward to the shot, but I understand the necessity of it. When I ultimately get to clinic, my nurse and doctor are relieved I made it. They make some medication adjustments and I receive the neupogen shot. Linda tells me it should take about 8 hours for the pain to kick in. I am to take Vicodin to try to keep it at bay. The pain and need for Vicodin should last between two and five days.  It's difficult to accept, but I realize acceptance is my only option.

I do everything I can to get everything I can done before I need to be safely in bed and medicated. I got the shot at 2:15. The pain didn't take 8 hours, it started up by 6:30. Uh oh, I am now chasing the pain instead of acting first.

So I'm writing this BEFORE the Vicodin kicks in and renders me less-than-mentally capable. I'm feeling the bone pain, getting shaky and agitated, and sweating like I'm in a sauna.

My girlfriend let me know yesterday that her new mantra is "This too shall pass."

I'm borrowing this one from her tonight and hoping its going to be quick.