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

Finally feeling fine.

Susan's helping me with this post. That's right, I named her Susan. And the other one is Derek. (After Derek Trucks and Susan Tedeschi, my fave blues musicians.)

Well, it's Tuesday before my next round of chemo, and the side effects from round 3 have finally subsided. No more feeling chemical-y, no more arms that feel like I've been hanging upside down on monkey bars for an hour, no more intense thigh pain (though the entire front of my left thigh is still numb), no more intestinal distress. For the most part, I feel like my old self, and it feels SO good. The dishes are done, the washer's going, the house is dusted and swept. Yay! 

I really am dreading round 4 on Thursday. I just don't want to feel all nasty again. But the good news is that after this round I'll get another CT scan and PET scan that will show how my nodes are looking. Let's hope they look nothin' but benign and sexy. Be-fine, even. 

(I did call Dr. Gaeke the other day when I was feeling so crappy, and she upped my dosage of Neurontin to 600 mg per day and made me an appointment with a neurologist. For August 13. A lot of good that will do me then! Sigh. As far as I can tell the Neurontin isn't doing jack, either. Boo.) 

Here it comes.

Well, it's Wednesday, and my leg is on fire, my body flashing with pain. Seems this round the side effects took a little longer to creep up on me.

Last week my leg pain had dulled to a numbness, but Thursday night after chemo it started flaring up with intense pins-and-needles pain again. That was about the only side effect I felt until yesterday when the firefly nerve pain began. Made it tough to sleep. This morning, the pain is just about unbearable. I've taken a steroid, two Darvocet, and the gabapentin for the nerves, but nothing is helping. My leg is on fire, my arms feel heavy, and the pain makes me just want to sleep it away, though it hurts so bad I can't sleep. Might make a call to Dr. Gaeke just to let her know what is going on, to see if she can think of anything else to do.

It will be a rough day, but I can make it through. I can make it through.  

Chemotherapy #3.

Right: Me and Dee outside Dr. Gaeke's office after Thursday's chemo. Dee sat with me and read Jane Austen's Persuasion while I slept.

As last week's side effects drew to a close, the next chemo treatment drew near. I woke up early on Wednesday to go get my blood drawn, and when Bonnie pushed the needle into my port, it didn't hurt—again! Either Bonnie has a special touch or my port site is becoming more resilient. Bonnie says it's the latter. Left Dr. Gaeke's office after just a few minutes, and headed back home to hang with Mom and Dad all day at the house.

My bloodwork looked good thanks to white blood cell booster shots I've been getting, so Thursday I headed to Dr. Gaeke's office for round three. Bonnie left me accessed from the day before, meaning she left the needle and tubes in place with a bunch of tape so I wouldn't have to be stuck again the next day. When it came time for chemo, the nurse simply screwed the chemo tube into the tube attached to my chest, and that was it. I was tethered to the beeping machine all day long while chemicals slowly pumped into my body.

Deanna met me at Dr. Gaeke's at around noon and brought lunch from Schlotzsky's. When she arrived, I was asleep in the recliner, the nurse was switching out chemo drugs. I must've fallen asleep while flipping channels, because BET was on when I woke up, with lots of bumping and grinding, some hot pants and gold chains. Dee started cracking up. Pretty funny. I turned the channel to something a bit more family-friendly while we ate our sandwiches, and then I killed time by tackling a pile of sewing I'd been putting off. Fixed a button on Graham's pants. Fixed holes in a sweatshirt and a sweater. Sewed a clasp onto a jacket. Felt good to do something mildly productive. After the sewing was complete, I settled into the green leather recliner and slept for the rest of the afternoon while Deanna read.

I felt mildly nauseated that night, but not too bad. Just... chemical-y. It's a strange sensation. I keep picturing that vat of "dip" in Who Framed Roger Rabbit?, the one the evil guy dips that shoe into. That's what it feels like inside after chemo. A little hot, a little tingly. And not in a good way.

Since the past two chemo treatments left me feeling pretty good the day after, I'd set up a tentative lunch date with some friends from work for Friday. I emailed the green light that morning that I was feeling pretty good, so the four of us girls met and caught up, had some laughs, hugs. I'm so fortunate to work with such wonderful people. I'm looking forward to the day I'm back at work, writing, laughing, responding to emails, phone calls. Looking forward to things being back to normal. As back to normal as I can be with super butch hair. But hey.

I left lunch and headed back to Middletown for the third time in three days. This time to get two shots: my booster and my Depro Lupron. The former promotes production of white and red blood counts so they don't dip too low again, the latter shuts down my ovaries while chemo is going on. So yeah, in addition to the hair loss, nausea, mouth sores, and nerve pain, I get to go through my own mini menopause during all this in an effort to prevent infertility. This is my second month and I've noticed a few hot flashes, but nothing too intolerable. The fertility specialist Graham and I saw said this shot will help preserve our chances of having kids, which is already decreased to 75% because of the chemo. But that's still pretty good, right? I won't worry about infertility until we have to, I suppose. 

Right now it's late into day 3 and I haven't started feeling the nerve pain yet. Let's hope and pray it doesn't rear its ugly head this time, that the cancer is losing this battle, that I can get back to work and back to normalcy very soon.

Love you all,

Tara 

Chemo sucks.

I'm having a really hard time with the chemo. Here's a breakdown of how the days after go:

Thursday: Chemo

Friday: Feel fine

Saturday: Start feeling slight nerve pain toward end of day

Sunday: Completely out of commission; on the couch all day with pulses of sharp, piercing nerve pain

Monday: Same story

Tuesday: Start to feel a little better, but stomach starts liquefying everything that hits it

Wednesday: Nerve pain gone, but still have diarrhea, stomach cramps, and very sexy gas

Thursday: Feel pretty good, normality on the horizon

So, Wednesday I finally got over the nerve pain and went out with my cousin Libby for breakfast. (Wore the wig. Lordy, it's hot. Bandanas are gonna have to be an option. Or nothing at all, I guess. Anyway.) Tolerated the stomach issues pretty well all day, and was happy to be feeling back to my old self. Then night hit. That numb patch on my thigh started spreading to a band that reaches from my rear to my groin, and instead of numbness, it felt like someone is poking me with scalding hot needles. I did not sleep at all that night. I called my doctor at 5:30 a.m. in total pain, and she called a prescription in for a patch that numbs the skin. I took off that minute to the 24-hour Walgreens to pick it up. The lady at the drive-through window had to deal with my sobbing as she tried to explain details about the patch. I was tired, in pain, and just fed up that I have to be dealing with this. 

When I got home, I put on the patch and felt a little relief. I crashed in exhaustion on the couch for two hours, and when I woke up, I Googled all I could about this nerve pain I'm feeling. Found it. Peripheral Neuropathy, which is caused by the "V" in ABVD, Vinblastine. Symptoms are piercing pain, heavy arms (feeling that, too), muscle weakness (yep). Pain lasts sometimes months after chemo is over, the website said. Hell no. I called Dr. Gaeke's office for an appointment to discuss what I'd read with her. I just can't deal with this for months. 

When I got to the office, I was a basket case. No sleep does that to me. I just cry. And cry. The nurse took me to the little room and asked me about my symptoms, and I went through four Kleenexes crying and blowing my nose like a nutcase. I'm just frustrated. Everybody's telling me I'm strong and I'll get through this, but it's so hard to feel strong when pain is taking over my body, my life. I'm home from work and don't have the health to do a load of laundry. Graham is taking such good care of me, and he comes home to a sink full of dishes. I feel so guilty. The nurse listened compassionately as I explained all of this with-pathetic-on-top. Ugh. 

Dr. Gaeke came in with a binder outlining cancer researchers' guidelines about how to deal with Hodgkin's. She was looking for any alternative to get me out of chemo as soon as possible. She said she's never had a Hodgkin's patient react with such nerve problems. I asked if my dosage was correct, she said they triple check, and yes, it's correct. I asked if it'd be possible to leave the "V" out of my treatment, a solution I read about online. She said no, she doesn't want to stray from the prescribed regimen. For the meantime she prescribed an anticonvulsant that should help with my nerves and said that instead of six chemo treatments, we'll try four plus radiation. So that means I'm half finished. As I left, I apologized for calling so early. She said she was sorry if she sounded groggy on the phone and to call anytime. 

I really don't know how I feel about cutting the chemo treatments by a third. I am having a very hard time with the treatment, that's for sure. But I don't want to drag things out, either. The ultimate goal is to get rid of the cancer, right? Will radiation be any better than chemo?

Please keep me in prayer. As I write, my thigh is pulsing with pain, my stomach is in a knot. Been feeling lately like if cancer won't kill me, then chemo surely will. I know I need to stay positive, but this week it's been especially difficult.

Love you all.

Tara