What a difference.

Wow, I looked bad. And felt worse than I looked. Now I've got some color in my cheeks, some fuzz on my scalp, some get up in my go. Amazing what a couple of months away from chemo will do for a gal. 

Giving thanks.

I'm thankful that my hair, eyebrows, and eyelashes are coming back. Thankful that I threw up only once this week. Thankful that the chemo is over, the radiation is over, the cancer is gone. 

Looking forward to the day I can be thankful my tastebuds have returned (I can't taste anything sweet), the day my saliva isn't sticking to the roof of my mouth like peanut butter, the day the early-morning nosebleeds have stopped, the day I don't wake up wheezing like a dedicated smoker, the day the skin on my neck and chest has changed from scaly and purple back to smooth and pasty.

This will take about 8 weeks, but when that all happens, I'll be thankful then, too.

Radiation is not easy.

The picture at right was taken from above by the radiation tech. The sides of the mask clamp onto the table so I can't move. Makes you hungry for fava beans and chianti, doesn't it?

I thought day-draining side effects were behind me. Not quite.

During my third radiation treatment, I started feeling nauseated on the table. As soon as treatment was over and the techs released me from my mask, I told them I thought I was going to throw up. "Oh, it's probably just anxiety," one said. No, that wasn't it, I thought. If I were going to throw up from anxiety, that would have happened on the first day, when the new sensation of being bolted down completely creeped me out.

I left the office and drove about 300 feet before I had to pull my car over and yak in a Target parking lot. I called the office to tell them I'd just lost it, to ask if that was expected. The nurse said when a large portion of the body is radiated, like an entire chest, which is my case, sometimes patients throw up. Sometimes.

I've been throwing up with regularity ever since. About 3-4 times a day, mostly at morning and at night. It's a combination of a raw esophagus, acid reflux, and the thick, sticky saliva I'm choking on. All caused by the radiation. I'm on liquid lidocane (disgusting yet effective), Miles's mixture (like Pepto and cough syrup combined), Zantac, Prilosec, and lots and lots of water. Swallowing is painful, so I haven't been eating much, which makes throwing up all the more painful. I've lost eight pounds in the last week. 

Some have asked, if the cancer is gone, why do I need the radiation? Protocol for dealing with Hodgkins combines chemotherapy with involved-field radiation. Even if chemo kills the cancer, it is very likely to return soon without radiation to the lymph nodes contained within the involved fields. Chest and neck, in my case. And I don't want it to come back.

I have four more 15-minute treatments ahead of me. The doc says it will get worse before it gets better. I've returned home from work, using vacation days until I'm able to go back. Another bummer.

So much easier than chemo, everyone told me. Well, in a way, it is. My pain is in one place: my throat. With chemo my entire body ached with exhaustion. But no matter how old you get, throwing up is just traumatic. Painful. Pitiful. At least I've got Graham here to hold my hair back for me. Wait...

Radiation: One down, 16 to go.

Left work today at 4:15 to make my 4:30 appointment. My first of 17 radiation treatments. Everyone's been telling me it will make me tired, my skin might burn afterward, but that it's cake compared to chemo.

They called me back at 5:15-- I'd waited for 45 minutes. Unacceptable for someone trying to juggle these appointments and a work schedule. They assured me it was an atypical day. Let's hope so.

I changed into a hospital gown, put my clothes and purse in a locker. Olga the technician led me back to a large room, beautifully decorated with a mini-rain forest of tropical plants in the corner, teak benches, hardwood flooring. Olga eased me onto the table and bolted my head down with the mask they'd cast last week.

I was in the mask for more than a half hour. I don't think any description could explain how it feels. So foreign. So uncomfortable. And while I was bolted down, two noises filled the room. One, a high-pitched screech, the other, the sound of an old-fashioned pencil sharpener cranking a circle around my body.  I was handling it all pretty well until the last five minutes. I felt like I couldn't take it anymore. I began to move my feet. I started to cry. (I realized the crying was a bad idea; in the mask, there's no wiping of tears, and visibility is reduced to zero.) The minute the table slid away from the big white donut, I moved my arms and Olga rushed to take the mask off. She could see I was uncomfortable and said she has some ideas about how to make tomorrow a little easier on me. 

I walked back to the dressing room, and as I changed out of my hospital gown, I could see the impression lines the mask had made on my face, and I saw my chest was red.

It was a hard few minutes, but it wasn't chemo. And for that, I am thankful.

Workin' it.

This morning I woke up, showered, dressed. Was out the door by 8:15 to head to work. Work. My first day back since late June. Walking from the parking lot to the door, I was as nervous as a high school freshman on the first day of school. Could I keep up like I used to? Would I be lost on what is happening now? It had been four months. What all had I missed?

All those feelings left me as soon as I got to my desk. Lots of hugs and laughing, a pot-luck breakfast, flowers and plants and even a poster for my cube (thanks, Christina!). Such a warm welcome back.

In August I surprised even myself when I broke into a cry while telling Dr. Gaeke how much I missed being at work. Who does that? But when you love what you do and work with such genuinely wonderful people, it's hard to be away. (Even harder to be away while being poisoned within an inch of your life. But hey.)

Thanks to everyone at Cinmar who made today so special for me. It feels great to be back. Looking forward to seeing  you all again tomorrow! 

Cancer is GONE!

Still rocking the male-pattern

baldness look. Thinking of

going as George Costanza

or John McCain for Halloween.

Cancer is GONE! Heard from my radiation oncologist yesterday, and she says I don't have to have my tonsils out. She took my PET scan results to Children's Hospital, where they care for quite a few Hodgkins patients. She reviewed the scans with the doctors and the radiologists there. All clear, she says. All clear!

Feels good to write that. Feels even better to feel good. It's been more than three weeks since my last chemo treatment, and I'm back. My personality has returned. I'm laughing. I'm moving. My appointments are tapering off. Aside from the double-takes I get when I am out in public thanks to my cancer-crying bandana, things feel almost normal. In fact, I'll be back at work on Monday.

I begin my radiation treatments on Wednesday at noon. I'll be taking my lunch break each day to get zapped. Please pray side effects don't knock me out. I'll keep you posted. 

Appointments a-plenty.

It's been a while since my last post. Let's play catch up, shall we?

• Thursday, 9/25: Had my last chemo treatment. Yay!

• Had a week of feeling like crap. Boo. 

• Tuesday, 9/30: Met my radiation oncologist, Dr. Levine. Love her. She's energetic and friendly and smart and adorable. She says I'll need 17 radiation treatments.

• Friday, 10/3: Had a PET scan. The administrator was annoyingly chatty--it was 8 in the morning and I was still tired and he wouldn't shut up with the small talk--and the nurse missed my port the first time she tried to stick me. It was a bad start to my day.

• Friday, 10/3: After my PET scan my arm was hurting and my upper back felt tight, so I called Dr. Gaeke. She asked me to come on in to her office to be checked. I headed back to Middletown--from whence I'd just come. The nurse took my vitals and my heart rate was up to 154. I was tachycartic. Dr. Gaeke said my blood clot was probably freaking my heart out, so she sent me to the ER where I had a chest x-ray, and EKG, and an ultrasound of my arm. I was in the ER for 9 long hours (Mom and Dad kept me good company, though). The ER doctor said he thought a piece of my clot broke off and moved to my lung, but the treatment for that is to take Coumadin, which I'm already on, so they sent me home.

• Monday, 10/6: Had my first occupational therapy appointment to try to reduce swelling in my arm. Again, the blood clot. I had no idea the clot would be such a pain in the ass. Or arm. Anyway, they measured up and down my arm, measured each finger, around my elbow and shoulder. My left is a total of 10cm larger than my right. They'll massage to stimulate lymph drainage (which the therapist pronounces druh•NAJJ, like it's French or something) and give me special garments to wear to reduce the swelling. Let's hope my wedding rings fit again soon.

• Tuesday, 10/7: Had an early morning appointment with Dr. Schaublin, my neurologist, for the nerve damage my left thigh has incurred because of the chemo. The doc wanted me to get an EMG, a test that uses shocks and muscle-deep needle pokes to determine the extent of the nerve damage. Because I am currently anticoagulated thanks to the Coumadin, he couldn't perform the needle portion of the test. Thank God. But the adorably blond technician wheeled out her cattle prod-esque machine and proceeded to shock the hell out of me. It felt like I had electric collars banded around my leg and was trying out for the Rockettes while standing next to the charged fence. The thing zapped me inches off the table. The doc came in afterward with the results of the test and said everything looked normal, have a nice day. Well, how 'bout that.  The pain has been better since my last round of chemo, so we'll just wait and see if the pain goes away on its own. If not, back to his office for more tests. Ugh.

• Tuesday, 10/7: Left the Dr. Schaublin's office and went across town to Dr. Gaeke's to go over the results from the PET scan. All traces of cancer in my collarbone area and breastbone area are gone (YAY!), but one of my tonsils is suspicious. WHAT?! My right tonsil is twice the size of the other and, according to the scan, it metabolized the radioactive glucose I'd been injected with--something only cancer cells are supposed to do. Dr. Gaeke said I should seen an ENT right away to get an opinion about what to do: tonsils out? More chemo? Radiate?

• Wednesday, 10/8: Went to see Dr. Coors, the ENT who called me back in May to tell me I had Hodgkins. He's one of the best doctors I've ever had. Just love the guy. Anway, he stuck his fingers down my throat (gag), pulled on my tongue, massaged my neck, and said I should probably get my tonsils out just to be safe. HAVEN'T I SUFFERED ENOUGH!? Not like it's a big deal, but ugh. Just one more round of appointments, one more procedure, one more obstacle between present misery and future relief.

• Today, 10/9: Had another occupational therapy appointment. Very relaxing. Like a light massage with emphasis on the armpits. A little strange, but still, relaxing. I'm a fan of the lymph druh•NAJJ.

• Today, 10/9: Left the therapy appointment and headed back to West Chester to get my CT scan in preparation for radiation. Before the scan, the technician had me lie on a table, face up. She pulled a warm, malleable plastic screen from an electric skillet filled with hot water and pressed it to my forehead, nose, chin, cheeks to form the mask they'll use to bolt me to the table each time I go in for radiation. After the plastic cooled and hardened, she pulled the mask from my face and led me back to get the CT scan. The technician put the mask on me and bolted me down for the first time. I couldn't move a millimeter if I wanted to. Not uncomfortable, just constricting, controlling, confining. The technician went on to open my hospital gown and align my body with the lasers emitted from the machine. She and a few assitants marked my arms and chest with Sharpies and covered their marks with special tape. These marks will stay on my body for the duration of my radiation experience. For the next six weeks or so I'll have inch-long blue dashes on each arm, chest, and abdomen, marks they'll use to position me exactly as I was today to reduce the chance of radiation scattering to my teeth, throat, breasts. To reduce the chance of radiation eventually causing cancer in those sites.

WHEW.

I hadn't realized until spelling all this out just how many appointments I've had lately. Before this ordeal I'd go see a doctor for the occasional sore throat, the annual gyno appointment. Now I'm a bona fide professional patient. And more to come. Surgery for the tonsils. Surgery to get my port out. Radiation every day (weekends off) for the next month. Monthly trips to Dr. Gaeke's for the next year to have my blood drawn to monitor my clot. Appointments every three months to keep an eye on possible cancer recurrence. And on. And on. And on. For the rest of my life.

But no appointment tomorrow. So I will sleep in, maybe do my nails, go for a walk. Just enjoy  a day without doctors.

Love you all,

Tara

On the horizon.

Hair's almost completely gone.

Except around my temples.

Just weird.

Tomorrow's my last chemo treatment. The last time sitting in that green pleather recliner while vitality drains away. Last of the sleepless nights. Last of the pain-inducing Neulasta shots. Last of the hiccups and heartburn and tortured taste buds. 

It won't be fun, but I can do it. One more, Tara. Just one more.

 

Seven down.

Ahem. I'd like to present my interpretation of chemo on the cancer patient. I call it Rose Gets Injected with a Bunch of Toxic Crap and Turns All Nasty. Please, no comments about my artistic genius. I'm trying to remain humble.

Results of my CT scan are in: Marked improvement, but the damn cells are still there. Almost gone, but still there. So I had chemo today. Boo. And I'll have round number eight, too. And after that, I'll have radiation. Boo again.

I've decided that chemo is a lot like an earthquake. You know how a 5.0 quake has a shaking amplitude 10 times that of a 4.0 (thanks, Wikipedia)? That's how chemo treatments are. Each is 10 times more difficult to endure than the previous round. I can't begin to express how demoralizing it is to walk into a room feeling vibrant and alive and then 6 hours later to walk out sick, drained, yucky. And then to know that that feeling won't just go away, but will soon be met with pain, sleeplessness, exhaustion. I can't truly be feeling much more than I felt after the first or second treatments, but it's the knowing, the becoming more and more familiar with the process that makes it so much worse. 

What's been the hardest on me lately, though, is the loss of my eyelashes. I know it sounds vain, but they did make me feel feminine, pretty, special. They were thick and long and looked great with mascara. Now I'm bald, nearly eyelashless, and obviously cancer striken. The lashes will probably grow back, but it's extra hard for me to look in the mirror now. I can't cover up my eyes with a pretty bandana. Well, I could. But that would just be silly. And dangerous.

Sometimes I feel like a big whiny whiner. People have said in efforts to comfort me, "You know, I knew a girl who had chemo for 4 years straight," or, "Yeah, her drips lasted 96 hours, not just 7." I feel like I can barely take what is coming at me now; it's impossible--and even enraging--to imagine the horror some have to go through. And the children. It's just not fair.

My aunt told me the story this week of how my grandpa responded when Dr. Gaeke came into the hospital room and told him there was nothing more she could do for the non-Hodgkins lymphoma and pancreatic cancer he'd been fighting for 9 years. A jokester 'til the end, he looked at her and said, "So doc, are you telling me I shouldn't renew my hunting license this fall?" He died 6 weeks later, his wife and six children at his bedside, at the age of 66.

That Stand Up to Cancer event was just on TV. I couldn't watch because it's all just too real for me right now. But I did catch their slogan: This is where the end of cancer begins. 

The end of cancer. That sounds so good. If it sounds good to you too, you can donate here.

Fingers crossed.

It's been a while since my last post, mainly because there's not a lot new to report. Last Wednesday I had my blood drawn, Thursday had chemo, Friday my Neulasta shot. Spent the next week dealing with the side effects: hiccups, heartburn, full-body firefly nerve pain, metallic taste buds, intestinal distress, life-sucking fatigue. Thanks to the 7.5 mG of coumadin I'm taking each day my blood is finally thin enough to start breaking up the clot that is still there making my arm sore, causing my veins to create that blue road map across my shoulder.

I am so ready for this to be over.

The good news is I've finished my 6th treatment (that's 3 cycles of ABVD), and I'm at the mark where I get more scans. I have a CT scan on Monday. PrayPrayPray that it's all gone, that there's nothing more in my neck or my chest, that I don't have to see a 7th or 8th treatment. That I don't have to have radiation, that I don't have to put my body at risk for future cancer at the radiated sites. That I can get back to work and stop poisoning myself, that my hair can start growing back, that I can start waking up each day feeling good, feeling like I can accomplish something. 

And about accomplishing something. I've decided that in the next year I will run a marathon. I've been researching how to train for one, and I know I can do it. I can see myself crossing that finish line, cancer free, my worst days behind me. I need to do everything in my power to mold my body into a strong, healthy environment no cancer can beat. Wish me luck—training might be worse than the chemo!

Love you all, 

Tara

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

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    

Hair, hair everywhere.

Ugh, it's falling out. Saturday and Sunday it was just a few hairs at a time, but now every time I run my hands through my hair, I come back with a nest.

God, give me the strength to shave it. I've never had long, flowing locks, but I've never gone bald, either. Right now I can run to the grocery or wherever without everyone there knowing I'm a cancer patient. But with a bald head? I guess it's just something I will have to get used to.

Every time I pull out a handful, I ask Graham if he'll still love me when I'm bald. Each time he replies cheerfully, "Yep." Not You just asked me that or Stop dwelling on it, just, "Yep." I apologized for asking over and over and he said, "Babe, ask me as many times as you need." I love him so much. 

I could really use some positive pushes toward boldly going bald, so bring it on. I'm a little needy right now. Blech. 

Chemo a no-go.

I went to Dr. Gaeke's office Thursday afternoon to have my blood drawn to make sure my body had recovered from round one, was strong enough for round two. Now that my port is in, it's not an ordeal to find a vein, but being stuck with the needle still hurts. The vein they used for my port is buried pretty deep, so when they punch through to hit the head of the port, they still have to go through layers, I still need to grip the sides of the chair, turn my head, close my eyes. Not fun. They drew the blood and prepped me for chemo by leaving the needle and a small tube in place. At least I wouldn't have to be stuck again on Friday.

Got a call Friday morning as I was getting ready to leave for chemo. I was packing my bag with the Godfather trilogy my folks had brought the day before when the phone rang. It was Kim telling me my white blood cell count is too low for chemo but that I still needed to go to the office to be "deaccessed," meaning they needed to take the needle and tubes out. So I left for Middletown.

When I got there, Kim elaborated. She said my count was at 900 and they like to see at least 1200, and that it's nothing to worry about and there's nothing I can do to boost my numbers. Just wait. I went into the little room so the nurse could flush my port with Hepron, an anticoagulent, which would keep the blood flowing in and out of my port. She flushed it, pulled the needle out, and stuck a little round band-aid on my chest. She sent me on my way, said they'd give me a call this week to set up chemo for Thursday (they're closed Friday for July 4th).

On one hand I'm glad to have a few more days of feeling well, but really I'm sorry to delay chemo. Sorry to delay the day I'm cancer free. But I know that day will be here soon.

Graham's parents made a trip up from Florida to visit with us this weekend. While we were all sitting around drinking coffee Saturday morning, I reached back to run my fingers through my bed head and came back with about 30 hairs in my hand. I reached back again. Ten more. I started tearing up and Brenda, Graham's mom, leaned over and gave me a big hug. Since then, hair has been falling out in my hands, on my shirt. Just a few hairs at a time, though. Not clumps. But I'll probably have to shave my melon before chemo on Thursday. We'll see. Deanna is standing by to take pictures, I think Graham will do the deed. He asked if I wanted him to shave his head, but his curly 'fro brings me too much joy. I just would hate to be without his locks, too. 

So, until Wednesday when I need to go back to Dr. Gaeke's to have my blood drawn, I will just enjoy a few days of feeling well. I'll organize my closets. Try a few recipes. Take some walks. Focus on the healing ahead.

Love you all.

Tara

What a week (OK, 11 days).

Well, it's been 11 days since my first chemo treatment. I'm realizing this will be a long couple of months.

Recent days have been filled with various side effects. At first I experienced intense pain, like flu aches but sharper. Like fireflies of flashing pain lighting up my body. Four flashes in my elbow. One in my hip. Two in my thigh. The back of my head. Constantly. I called Dr. Gaeke about the pain, which had me relegated to the couch, trying to sleep for relief. She prescribed some Darvocet and more Prednisone, which helped the pain but made me so jittery that I literally paced my living room because I just. couldn't. sit. down. I'm off the Prednisone now (only needed it for three days), and the pain is gone. I'm feeling better except for the stomach cramps. Feels like I'm super nervous about something. (Which I am: my next chemo treatment and the day my hair starts falling out in clumps. But the cramps are from the chemo destroying the lining of my gut.) Oh, and I've lost the feeling in six of my fingertips (makes it tough to type!) and a palm-sized patch on my left thigh. Again, the chemo.

Thursday I decided it was time to face the facts and do what is best for my body. I met with human resources to put in my request for time off, faxed my doctor the paperwork, talked with my understanding boss, and left. With a chemo treatment every two weeks, each treatment knocking me on my ass for a week after, the few days of peace I'll have are just too precious to spend sitting behind a desk. It is time to get well. And soon. Thanks to FMLA (Family Medical Leave Act), I'm able to be paid 60% of my salary while on leave, and I'm guaranteed my job when I return in a few months. 

Yesterday I commenced my medical leave by going wig shopping with my sister. She had already scoped out the wig shop at the mall, had gone in to ask questions about synthetic vs. real hair, do they come in other shades of blond, etc. We took Nikolas along, my almost-4-year-old nephew, who was so good. He cracked up when I tried on the curly wig, cackled when I tried on the Charlie's Angels wig. (I wish we would've had the camera with us!) While we were in there, another cancer patient was picking out her own wig. An older lady with a sweet smile who bought the first wig she tried on. We showed each other our port scars and wished each other well. Dee helped me pick one out that looks remarkably like my real 'do... a straight blond bob, only this one has bangs to hide the fake hair line. It's a little long, but my hair stylist can trim it up for me. I feel a little more prepared to lose the hair now. Deanna said she'll be there to take professional pics of my G.I. Jane moment when I take a razor to my balding head. Those will be blogworthy, I'm sure. Stay tuned.

Deanna has been a rock through this. Her matter-of-fact, no-drama attitude, sense of humor, and adorable son have filled me with the comfort that it's OK to be sick right now. It's OK to not work. It's OK to be scared. She's treating me not like I have a foot in the grave, but like I'm a regular person dealing with a shitty situation. She was there to hug me and cry with me when I showed up to her house to go out, only to realize all I had strength to do was sleep. She took me to a doctor's appointment when I needed a ride even though it meant dropping what she was doing and toting her son to West Chester in a truck with no air conditioning. She's taught me that even though it sucks and is gonna suck, the strength comes in dealing with it without unnecessary worrying. I love her so much.

Chemo #2 is coming up this Friday. I have to go to Dr. Gaeke's Thursday to give a blood sample so they can make sure my red blood cell and white blood cell levels are healthy enough to handle Friday's round of chemo. Pray that my levels are good, that it doesn't hurt too much when they stick me, that this round doesn't cause so much pain afterward, that it's kicking the lymphoma's ass. 

Love you all,

Tara

Friday the 13th: Chemotherapy #1.

Left: Graham sat in that rigid, uncomfortable chair while my chemo dripped from 9:30 a.m. to 6:30 p.m. Poor guy!

Below: Chemo dripping into my port (white patch on my chest).

Friday morning (the 13th—appropriate) Graham drove me to Dr. Gaeke's office for my first chemo treatment. After a short wait, Kim, a nurse at the office, took us back to room #5—a small room with a recliner, TV, a few small tables and two chairs. 

Graham unpacked our bag full of books, magazines, movies. (He's really trying to get me to watch the original Star Wars trilogy, and now that I was being held captive for hours, he figured it'd be prime time.) I sat back in the recliner and they accessed my port, first letting bags of saline, benadryl, and a test run of chemo drip to make sure I didn't have an allregic reaction. By about 11, it was time for the real chemo to begin. Kim came in and changed the bags that hung from the pole, pushed some buttons on the machine, then left. Graham and I sat and waited. We read. We watched TV. I slept. Boredom was all we had to overcome that day. All was over by 6:00, and we left the office around 6:30. Quite a day.

I spent the rest of the night wondering how my body would react. Waiting for something to happen. I woke up Saturday and felt great. Graham and I went to a garage sale. Went to Ikea. Out to lunch. I felt fantastic. Wonderful, I thought.

I woke up Sunday, though, in severe pain. Like my body was filled with fireflies, each exploding with pain. Shoulder. Knee. Elbow. Unbearable. And my mouth began to get raw. I took a drink of orange juice and realized this the hard way. The chemo is killing rapidly reproducing cells, and the lining of my mouth and gut can't be spared. Heartburn has begun, too.

I tried to go to work on Monday, but had to leave at noon. I stayed home Tuesday. Tried again today to go to work, and had to leave at noon. The pain makes it difficult to focus on anything but the little explosions I feel.

Please pray I get over this, that each chemo treatment won't leave me in so much pain. This will be a long three months, I'm afraid.

Love you all,

Tara

Port-o-Tara.

Left: Aunt Mary was my nurse today at the surgery center where they put in my port. She comforted me with a stuffed animal: a turkey that emits an authentic, Audubon Society-approved gobble. It cracked me up. 

Right: Port is in under the skin, dressed and ready for chemo tomorrow. After this treatment, the nurse will take the tubes out, leaving only the incision showing.

Well, the fun begins. Bright and early Graham drove me to Middletown for my portacath surgery. By 8 o'clock I was in a gown and hospital socks, lying in a gurney as nurses stuck me for my IV. Wonderful, haze-inducing medicine began to drip. (When I sat up in bed and realized how dizzy I was, the anesthesiologist leaned down and whispered with a huge grin, "Yeah, it's good shit." Hilarious.) I was happy to see my Aunt Mary there—she just happens to work at the surgery center my oncologist selected. Mary hugged me and presented me with a journal and an appointment book to fill with all things cancer-related, later to be burned after my last treatment, she said. I love that woman.

They didn't completely knock me out for the surgery, but induced a deep drowsiness. I vaguely remember them wheeling me to the operating room, transferring me to the table, exposing my ta-tas for all to see. In the fog, I didn't mind. Just drifted far, far away as they began the incision to search for a vein sizable enough to insert the catheter.

The next thing I recall is waking up on the operating table with my wrists and legs tied down, wanting desperately to move. As I was coming to, I heard a nurse say, "Well, I hope that works. It's such a small vein." I started to freak that the surgery was unsuccessful. I moved my legs against the fabric tie-downs. Started to cry. They told me to hold still so they could finish. I did. They wheeled me back to a curtained area where they monitored me until it was time to leave. I'm not sure if it was the drugs, the nurse's comment, the dread of impending chemo—I couldn't stop crying. Not a sob, just a steady stream of tears as I sipped my water, sat back against the pillow, listened to the beep of the blood pressure monitor, eavesdropped on the family on the other side of the curtain talk about their son's tonsillectomy, how he wants a purple popsicle, go get him a purple popsicle, not a push-up one but the kind with a stick.

Eventually I calmed down, and Graham drove me down the street to Dr. Gaeke's office. She wanted to check the port site to see if it would be possible to start chemo right then and there, but decided I needed a day to rest. She went ahead and briefed me on what chemotherapy is exactly, what to expect. She went on and on about side effects of ABVD (andriamycin, bleomycin, vinblastine, and dacarbazine), the chemo regimen I'll begin tomorrow. Nausea. Severe fatigue. Sores in the mouth. Have you shopped for a wig yet? Call me right away if you see red dots on your ankles. Hard to believe what's going on inside my neck is dangerous enough to warrant injecting myself with such toxicity. But it is.

Left Dr. Gaeke's office, and headed home for lunch and a nap. Graham worked from home for a few hours, then ran out to pick up my prescriptions (two anti-nausea drugs for tomorrow). He came home with the drugs and some chocolate-almond ice cream. Perfect.

It's about 10:30 now, and I'm not experiencing too much pain. Can't move my arm much, but it's not too bad. Need to head to bed to get ready for the big day. 

Thanks for reading, thanks for loving, thanks for everything. Love you all.

Tara

Results are in.

Pic: Meet the new kittens.

As Nobel Peace Prize-winner

Albert Schweitzer once said,

"There are two means of refuge

from the misery of life:

music and cats."

Met with my oncologist on Wednesday and found out I'm a stage 2A Hodgkin's based on these test results:

Abdomen/Pelvis CT: shows no cancer below the belt

Bone marrow biopsy: all clear, no cancer in marrow

PET: there is cancer in my collarbone area and my mediastinum (breast bone area)

My MUGA and Pulmonary Function Test show my heart and lungs are strong enough for chemo. I'll be starting on Thursday. Three months of chemo to come, followed by 6-12 weeks of daily radiation.

Before that, though, I'll need a portacath. It's a device about the size of a quarter that will be implanted in my chest. It has a hole in the middle that will accept a needle, and a tail that will slide into a vein. This will appear as a bump under the skin and will leave a 2-inch horizontal scar on my chest, marking me a cancer patient long after the last bag of chemo drips dry. Like a fraternity branding. A member of a group I never wanted to join. Hazing I never wanted to endure. 

Monday afternoon I'll meet with the surgeon who will put in my portacath. I'm not exactly sure why this is necessary; I guess to educate me about what it will be like to live with this thing under my chest for the next 3-6 months. Thursday I have the surgery, and right afterward I leave for my first chemo treatment. 

This is all hitting me pretty hard. I couldn't get to sleep last night and just started crying. Graham woke up, reached over to grab my hand, and said only, "Let it out." The perfect thing to say.

After Wednesday's appointment Graham and I stopped at a little house to pick up some kittens we found on Craig's List. We opened the door and were hit with an atomic cat urine bomb. Filth. Filth plus cats. Fourteen of them. So yeah, we rescued a couple. And they're adorable. A rambunctous black and white male with big blue eyes and a green-eyed lady with brownish stripes. They're best buds, and watching them race around the basement has been such a great diversion. Names to come.

So, the kittens are helping, but I need a way to party before my first round of chemo. Research the Whig Party on Wikipedia? Storyboard my own Pixar movie and call it Finding Chemo? Ideas welcome.

Love you all,

Tara

Furballs and fatigue.

So... I think it's time for a couple of kittens. Even though they shed, poop, puke, and scratch (the charming qualities that have deterred me up to this point), these days I could use an extra dose of cute and hilarious in my life. What do you think, Lymph and Node? Maligna and Tumor? Hodgkin and 'Phoma?

And while on how cuddly 'phoma is, I've noticed that I'm getting super tired in the early evenings. Friday night I went to bed at 7:30, didn't wake up until 8:30 Saturday morning. That's really unlike me. And my entire upper right quadrant aches just about all the time, from the back of my head to my jaw, down my shoulder to my elbow. (I'm so glad it does hurt, though. It's rare for Hodgkin's to cause any pain at all. If that lump hadn't ached a month and a half ago, I know I wouldn't have noticed.) Hate to say it, but I can't wait to get this chemo party started. 

Waiting game.

Tuesday I had my MUGA test, which makes sure my heart is strong enough to endure chemo. I assumed this would be easy, a few sticky patches on my chest and back, a few pictures, that's it. But the first nurse came in hacking and complaining about her sinus problems, the second apologizing for her garlic breath because of "these crackers and dip I just can't get enough of, my daughter told me about 'em, they're so good but boy, do they stink." Lovely.

I was surprised when Sinus Face told me they'd be injecting me with a radioactive isotope. Panic. I have tiny veins, and every time I have to be stuck, it's an ordeal. I end up surrounded by four or five nurses, each apologizing for the various holes they create in my wrists, hands, arms. This time was no exception. Garlic Breath couldn't find a vein big enough. She stuck me once. Again. The other nurse tried. Each time hurt more than the last, each more frustrating, more anticipation of the pain. I just sat in the chair and cried helplessly, mostly out of selfish pity that I have to be going through this.

Finally, the injection worked in my left wrist. They directed me to another room, where I lay in a big tube, first on my back, then on my side. Before I left, they gave me a card to carry for the next week, which would identify me as radioactive in the event I set off any alarms at airline security or federal buildings. The card basically says, "Hello, I'm not a nuclear terrorist, I'm just a radioactive cancer patient. Please do not send me to Guantanamo Bay."

Yesterday was my PET scan. I spent the morning dreading yet another needle. I arrived at the small office and a tall, blond gentleman guided me to a little room containing nothing but an oversized wingback recliner and a magazine stand. He asked me to relax, and I gripped the arm of the leather chair as he approached with the needle. That's it? I felt almost nothing. He was sent from the heavens, obviously. Not like the obnoxious duo the day before. It would be an hour before the injection would take effect, so I stole a glorious little nap in that big chair in the quiet room. Peace. Calm. No running to appointments. No chit-chat with nurses. No filling out forms asking, "Is today the 28th?" Just peace. 

The man woke me gently, then took me to another room with another tube. I lay flat as a board and motionless for 45 minutes as the giant donut measured the way my body—and specifically the cancer—was metabolizing the radioactive glucose that had been injected an hour before. (Cancer gobbles it up and appears as a bright flash on the PET images.) Eventually, the test was over. I put my earrings back in, my shoes back on. Before I left, the nice ladies at the front desk gave me a box of chocolates for my trouble. I smiled and told them thanks, I might just be back tomorrow. 

As of now, testing is over. I have appointments with my oncologist next week to review the results and discuss treatment options. Stay tuned.

Love you all,

Tara

Three tests down.

Not much to report... my back's pretty sore from the bone marrow biopsy the other day. Yesterday morning I had the CT scan and pulmonary test done... those were cake compared with the biopsy the day before.

The CT involved drinking about 20 ounces of nasty grape-flavored beverage and then being injected with the contrast dye. Pretty easy, though I despise needles and fear the nurses who yield them. After that was over, went to the second floor of the same facility to get my pulmonary done. No needles, so it was a piece of pie. Had to breathe into a tube hooked up to a computer while too-cheerful technician, who seemed to be straight from teaching a Lamaze class, coached me. "Big breath in in in in in, hold it...now push it out out out out...good job! One more..." Did that about 20 times, then left the place to enjoy a somewhat normal day visiting my sister, sis-in-law, and my two adorable nephews.

Today it's my cousin's high school graduation party, where no doubt all kinds of people will ask about what's going on. I do appreciate the concern, but repeating everything is tiresome, especially when I don't yet know how far the cancer's spread, what kind of treatment I'll need, all the rest. Would like some normalcy, but it seems that's out the door for awhile. Still working on accepting that. 

Tara

I (heart) Ativan.

Pic: Doc extracted bone and marrow  from my hip with this corkscrew-like torture device.

Left work mid-day to go get bone sucked out of my body. Yes! Went to go pick Graham up, and popped my first Ativan (AKA the date rape drug). Right away I started feeling warm and loopy, like I'd had a couple drinks. I started telling what I considered to be really funny jokes as Graham drove me to the appointment. 

We arrived, and per doc's instruction, took the second Ativan as I sat in the waiting room. I began singing Johnny and June's "Time's a Wastin'" and Graham chimed in. Nice. Needless to say, I was well prepared for my bone marrow biopsy, the test that would let me know if the cancer has spread to my marrow, indicating stage 4 Hodgkin's.

Finally, the nurse called us back to the room, and asked me to lie on the paper-covered table. She turned me sideways and held me down. Doc numbed me with three bee-sting sticks, then proceeded with the marrow extraction. Holy hell. Think about how it would feel to have a wine corkscrew taking out a piece of your bone like it were a cork. That's exactly how it felt, and actually, that's very close to what was happening—the nurse showed me afterward the tool he used. Yep, a corkscrew concealed inside a sharp, hollow tube. Yes, I was numb, but I could still sense the crank-crank-crank as the doc said sorry-sorry-sorry after my every yelp. But in 20 minutes it was over, they bandaged me up, and Graham and I were on our way.

I slept peacefully in the car thanks to my new friend Ativan. Barely remembered a thing by the time we got home. Graham had to remind me that during the procedure that the doctor's cell went off, blasting "Love in an Elevator" throughout the room. The doc laughed mid-crank and said, "Oh, that's my wife." Ew.

Anyway, the worst test is over, and I can still walk and wiggle. CT of the pelvis and pulmonary tests tomorrow morning. Those shouldn't be too bad at all.

Love you all.

Tara

Testing. Testing.

Pic: incision from last week's surgical biopsy, the test that determined I have Hodgkin's

So...I had an appointment today with a different oncologist. The first on Monday went OK, but I just didn't feel that great about the office or the doctor. The office seemed disorganized, the doctor like he'd rather be golfing, the appointment setter took her sweet time getting back with me.  I left that appointment knowing I needed more testing, but that's about it. He didn't even look at the CT films I brought with me.

Family to the rescue. My Aunt Mary made a call to Dr. Gaeke, the oncologist who treated my grandpa years ago. He died when I was in middle school after having battled stage 4 non-Hodgkin's lymphoma for eight years. Dr. Gaeke's office got me in right away—today. 

The office was the polar opposite of the oncology center I'd visited on Monday. Instead of a giant waiting room filled with patients in various stages of desperation, the small waiting room felt like it'd been there waiting for me to walk in. There was calm, peace, friendliness. When I checked in, Bonnie, this sweet, sweet nurse, took me to a room and charted my entire medical history down to each sprained ankle and wisdom tooth extraction. She looked at me with kindness after hearing that two different doctors put me on antibiotics before realizing it was something more serious, and said, "Honey, when they see someone as young as you, they just don't want to believe it could be anything else." So sweet.

Soon, Dr. Gaeke came in, her salt-and-pepper hair pulled into a long pony tail. She greeted me with a firm handshake, sat down, and proceeded to review the entire history the nurse had just collected, word by word, aloud. She asked for my my CT films, then held each sheet up to the light and educated me as I looked over her shoulder. When the visit came to a close, she asked me what other questions I had—not "do" I have more questions, a little difference that means so much. She spent two full hours with me, was compassionate without being sappy, professional without being cold. 

And she was thorough. Whereas the other doctor didn't even look at my CT films, Dr. Gaeke did, and made a realization. My neck is showing enlarged lymph nodes on both sides, not just the right side, the one causing me pain. In fact, the lymph nodes on the left side of my neck are even more enlarged than the ones on my right side, leading Dr. Gaeke to suspect I'm in stage 3, at least stage 2. 

But the test results to come will tell us more. Bone marrow biopsy tomorrow. Ugh. That one is gonna hurt. Big giant needle into my hip bone to see if the cancer's reached marrow. Friday, CT scan of the pelvic region and a test of my lungs to be sure I can handle the chemical in chemo known to be hard on the lungs. Tuesday, a PET scan, where they'll inject radioactive glucose into my blood, let me sit and radiate an hour, then scan as the cancer sucks up the sugar—this gives a very precise idea of what's cancer, what's not. Wednesday is my MUGA test, where they measure the volume of blood pumped by my heart's left ventricle. This is a good indication of heart strength, which they need to know since one chemical administered in chemo is tough on the heart.

By this time next week I'll have had it, I'm sure. Please keep me in prayer, and pray for those poor souls about to administer all these tests. (When I had my wisdom teeth out, I actually told my dentist, "No offense, but I pretty much hate you!" That's what he deserved for not putting me under.)

I'll let you know how my bone marrow biopsy goes tomorrow, if I can hobble up to my office to type afterward. Love you all!

Tara