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

Worth a thousand words.

Sunday was a rough day. Deepest thanks to Deanna for photographing the event with all her talent and tenderness. And to Graham for his sweet, unconditional love and mad clipper skillz. (Last pic shows me rockin' the new wig.) I've gotta say, you have no idea how many shampoo ads are on TV until you shave your head.

Chemotherapy #2.

Deanna and Graham split

Thursday's chemo-drip-a-thon.

Bright and early Wednesday I left for Dr. Gaeke's so they could draw blood again to make sure my levels had come up. I was led back to a little room, gripped the sides of the chair, turned my head, and it didn't hurt! Thank God. I looked at Bonnie, the nurse, and asked if she could do it every time.

Straight from Middletown and feeling good, I took off to meet some coworkers for lunch. There's a gang of four of us that would go out every week, and since I'd taken leave, I'd been missing their comic relief terribly. We got in some great laughs, some big hugs, and promised to do it again soon. It was just what I needed.

That night before chemo, I met my grandparents for dinner at Bob Evans, where, as usual, Grandma ordered carrots, grilled chicken, tossed salad, Grandpa the meat loaf and iced tea. Graham wasn't able to go with us because of a late work night, but it was great to simply sit and chat, the three of us. Grandpa gave me some tips on some plumbing issues we'd had with the sink, Grandma talked about July 4th and how it's supposed to rain, so she'd better clean out the garage so we can all sit in there if we need to. They're adorable.

I'd had a few days of feeling good, a few good visits with friends and family, and was ready for chemo #2. Well, not really. But it was time. Deanna met me there at 9:30 and brought some Starbucks and muffins for breakfast. We kept up pretty good conversation all morning until they started the Benadryl drip... I started losing focus thanks to sleep-inducing side effects. So we turned on the TV. Deanna had a wedding to photograph that night and needed to leave at 1, Graham picked up right where she left off and took the evening shift. So boring. Tiny room. Tiny TV. Ugh. But we were out of there by 5:30, and I hit the hay as soon as we got home.

Friday I felt pretty good. In keeping with last treatment's theme, the day after is OK, day after that is hell. Same story this time. Friday was July 4th, and we went to my grandparents' house to hang with the fam. I thought about taking my clippers along, letting each family member take a pass at my head. But not yet. We left and I came home to rest, Graham boogied on the house. On the way home when he told me he would work on the laundry and the dishes, I just started crying. I felt so thankful to have this great guy taking on the load, but helpless and guilty at the same time that I was too exhausted to help.

Yesterday and today have been filled with the same lightning bug pains I had after round 1, but I'm trying to tolerate them instead of taking pain meds or steroids. The Prednisone I took before controlled the pain, but made me so, so jittery. Not sure which is worse, the pain, or pacing my living room like a nutcase. All I can hope for right now is the pain doesn't last quite as long.

Thanks for reading. Love you all.

Tara