Clot or not.

Right: I won a surprise

three day, two night stay at

Middletown's Atrium Hospital.

Thursday I called Dr. Gaeke's office with two questions: 1) Can I go to North Carolina with my family to visit my brother while I'm feeling well and 2) Why does my arm hurt when I raise it? I explained to her that my left arm had been hurting for two days, kind of like a pulled muscle, and I noticed after my shower that all the veins in my left shoulder made a visible a blue spiderweb from my elbow to my collarbone, whereas my right shoulder looked normal, veinless. She said sure, go to North Carolina, but first why don't you go right away for an ultrasound of your arm. She suspected a blood clot.

I packed my car for North Carolina then left for the hospital. I figured I'd go get the ultrasound then head up to Miamisburg and meet up with my sister and nephew to leave for the trip together.  

When I arrived at the hospital, they gave me a plastic buzzer and told me to have a seat. Was I waiting for a table at a theme restaurant or in line for a medical procedure? I sat, the device buzzed, and the ultrasound tech came to get me. She led me back to a small room where I stretched out on the table and stuck my arm out to be covered with cold clear goo. She pressed the wand into my arm, shoulder, side. "I found one," she said after searching a while.

I had no idea this would mean I'd spend the next three days in the hospital. Or the next week giving myself shots in the stomach. Or the next six months on blood thinners. 

I got home last night from the hospital, and here's what I know: it's common for patients with ports to get blood clots. I'd been on 1mG of coumadin (a blood thinner) each day since my port was put in to prevent this from happening, but it didn't work. Docs aren't sure why it didn't. It's a good thing I called when I noticed something was wrong because left unchecked, blood clots can make their way to the lungs, the heart, the brain, which is not good news at all.

I spent the three days in the hospital getting shots of blood thinners and then having my blood drawn to see how it was responding. I responded well to the shots: I began at a .9 and made my way to 1.3 in 24 hours, and they're hoping to get me to a 4 or 5 to break up this clot. I'll have my blood drawn tomorrow to check again. A nurse had to show me how to give myself shots of Lovenox, an blood thinner known for being a budget buster. (Thankfully my insurance covered all but $100. They paid more than $1000.) The injection has to be administered around the belly button at a 45 degree angle. I was terrified of this at first, but was surprised to find it wasn't so bad, wasn't so hard. They told me if I couldn't do it I'd be in the hospital until I learned how, so I guess that was the big motivator. 

Of course the trip to North Carolina is out. My mom, dad, sister, and nephew are all there visiting my brother and his wife and son. And even though I'm sad I'm missing out, it feels good to be home and not bored to death in a hospital bed. My arm's a little sore still, my veins on my left side still prominent. This ordeal on top of everything else I'm going through has me wondering what won't happen to me during this cancer escapade. At least for now I'm feeling pretty good... of course, next chemo is Thursday, so I'd better enjoy it while I can. 

More of the same.

Pic: Me and my dad goofing off at my nephew's birthday party. I'm reluctantly learning how to rock the 'dana in public.

More of the same: Wednesday, blood drawn. Thursday, chemo for seven hours, Dee brought me lunch. Friday felt just fine, but headed to the hospital for my Neulasta shot. Saturday and today completely sore all over from the shot, which spurs growth of red and white blood cells. These cells are produced in my bone marrow, so I ache all over, especially in arms, legs, and back, until the cells are pushed out into the rest of me. Plus the nerve pain has started today and my tastebuds are all wacked, like I've been sucking on a galvanized bucket. And have I mentioned the hiccups? A calling card of ABVD. Off and on for about four days after chemo. Annoying, but when paired with heartburn, painful. Chemo still sucks, and this treatment was 5 of 8. Looking forward to September 25, my last chemo treatment (let's hope). It'll be a good birthday present.

Instead of whining about that all over again, let's talk about hair. It's been about 6 weeks since I shaved it, and for a good three weeks, looking in the mirror was surreal. I just couldn't recognize the baldy looking back at me. It wasn't me, wasn't how I thought of myself, wasn't what I wanted to see. I'd avoid mirrors, even. And whereas some habits were a joy to break (blow drying with my big round brush was a loud, obnoxious, tedious part of my pre-chemo existence), some habits wouldn't die. I would still reach back before I turned on the shower to take out my ponytail holder. When I felt instead a texture reminiscent of my brother's T-ball era melon, I would shake my head and think, 'Oh yeah.' Way bizarre.

Six weeks later, the growth on my head is just odd. Not everything has fallen out, so the parts that have been growing since I shaved it are longer, like when my aforementioned brother's T-ball head would grow out before a haircut and look all frizzy and feel soft instead of stubbly. This hair of mine is long enough to become matted; after I woke up one morning, Graham said it looked like one of our kittens had been licking my head. Sexy, I'm sure. The other parts, like around my forehead's hairline, have grown very, very thin. Do I shave it again to even everything back out, or just leave it and let the long hairs do their thing? I just don't know. I guess we'll see where I am after my last chemo treatment and worry about it then.

For now, though, I've moved on to a new stage. A wow-it's-gonna-be-a-long-time-before-you-can-go-out-without-a-bandana-so-you'd-better-learn-to-love-this stage. I've been YouTubing "how to tie a head scarf" to find new ideas, new ways to feel and look pretty. (The wig is an option, but it's a hot, self-consciousness-inducing option. I don't know how Dolly does it.) I think I'll go shopping this week for some bigger, solid-colored scarves. The ones I have now are bandanas, which I'm learning can go underneath bigger scarves to create a dressier look. When I finally can go back to work (October 1 is my goal date right now), I'll probably have to spend as much time fussing with the rectangles of fabric as I used to spend blow drying my hair. But until my short hair starts making some sort of sense, scarves are my new normal.

Love you all.

Tara 

A disappointing week.

As the routine goes, Wednesday I left for Middletown to have my blood drawn. Didn't get Bonnie this time, and it hurt like hell. Or like someone sticking a needle in my chest. I guess that's more accurate. They left me accessed for the next day's chemo and I went on my way.

That night I got a call from the neurologist's office: an appointment had opened up, and could I be there at 8 in the morning. Yes, I'll be there.

The neurologist was young and friendly. I explained the nerve pain I'd been having and talked at length about the excruciating thigh pain. He had me put on some ultra sexy blue paper shorts and then asked me to touch my nose, wiggle my toes, walk this way, walk back that way. The only test that seemed to matter was when he pulled a pin out of his pocket and started sticking my leg with it. As soon as he hit the area of doom, I went through the roof. So I guess instead of calling it numb we should call it super sensitive. He upped my prescription of gabapentin (Neurontin) to 1800 mg per day. Quite a step up from the 300 mg Dr. Gaeke had prescribed. The neurologist called that a "holistic" dose, whatever that means. He also ordered an EMG test of my legs and both arms (since my fingertips are numb, too), which I guess is basically torture. Shocks up and down the limbs first, then needles stuck into muscle to see how the nerves react. I'm freaking out a little bit about it, but the appointment isn't until the 22nd, so I've pushed it deep, deep down for now. Ugh.

Graham and I left that appointment and headed straight to Dr. Gaeke's office. Graham took the day off to sit with me all day Thursday. The idea was it was my last treatment. That's what Dr. Gaeke had told me when she came in with her binder the day I was having so much trouble with the side effects. Four then radiation. Well, a few hours into chemo Dr. Gaeke came in, her eyebrows apologizing before she even opened her mouth. Eight treatments, she said. No. No. No, I thought. The good news is we're at the half-way point, she said. I just can't do this anymore. I teared up as she explained she'd spoken with the radiation oncologist who was very nervous about giving me only four treatments because of the risk excess radiation poses in causing breast cancer. That's about all she said. She left the room. I cried.

I've been crying since. I think I need an attitude adjustment. Why can't I be like those freak shows you see on TV, the ones who are all smiles because, they say, "Life is good!", the ones who tell their stories about suffering through chemo and appreciating every minute of it and blah blah blah. Let me tell you, life with chemo is not good. I'm not a fan of insanely toxic chemicals being pumped into my body. Pain that lasts for days isn't good. Making sure there's a large cup nearby just in case you need to puke? That's not fun either. None of this is fun. None of this is good. I'm sorry if I'm not being particularly inspirational. Chemo is sucking the inspiration right out of me, and knowing I've got two more months in bed with the ugly monster has simply pissed me off.

If you think I need a good smack and talking to, bring it on. My attitude's in the porta pits right about now. Plus it's day 5 after chemo and my body's flashing, my thigh stinging, my heartburn, well, burning. And I'm only half way there.

Love you all. 

Tara