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.