CHEMO WEEK 1, Treatment #1:
It was my very first day of chemo. The first thing I noticed when I walked into the waiting room was that no one else had the same amount of stuff as I did. I looked like I was moving into the chemo center. My huge bag was overflowing with “cancer snacks” (fruit gummies, hard candies, nuts, lemon drops, and protein bars), socks, books, Kindle, iPad, and a soft blanket inscribed with my name given to me by my friend Heather the night before at dinner.
Why did everyone else have such small bags?
And then there was my husband, with his very professional video camera with the huge fuzzy microphone on top, and the still camera with flash hanging over his shoulder. My daughter, my son, and his girlfriend were also in tow. We got a lot of stares when we walked into the waiting room.
I think people wondered if we were famous.
I looked around at the other people in the waiting room. The breast cancer women were always visible because they wore a lot of pink, especially pink caps. The men were harder to pick out. Their baldness is a common thing. Being a bald woman is a pretty strong indicator that you have cancer, but for men their only giveaway is a visible chest port. In general, though, everyone looked surprisingly healthy.
It was also an extremely well-dressed crowd. I assumed people would dress comfortably for chemo. I wore track pants, a stretchy t-shirt, a cotton hoodie, and sandals. Most of the other women were much dressier. I felt downright shabby. But then again, not everyone was there for chemo, as the waiting room accommodates patients coming in to see their doctors, just as I had a few short weeks earlier.
Before seeing Dr K for a pelvic exam, I was called back to Fast Track for blood work. They would be accessing my chest port for the very first time, and I was a little nervous about that. It had only been inserted three days prior and the area was still sore and bruised. The nurse sprayed the port with a blast of ice cold Lidocaine, put face masks on both of us to prevent any chance of germs entering the port leading to infection, and inserted the needle. I felt it, but barely, and I’ll take that any day over inserting an IV into my wrist.
Afterwards I saw Dr K for a very quick pelvic exam, and then we were sent back to the waiting room where we waited for about thirty minutes before being called back to our chemo room. By this time I was very nervous.
Finally, we were called back. The chemo rooms at my cancer center are all individual rooms. Each room has a TV, DVD, a recliner, and two chairs for visitors. I settled into the recliner for my very first chemo treatment ever.
Right off the bat there was trouble. The very nice nurse told Michael she didn’t think he could record in the hospital. He explained that he was recording me for personal purposes only. Then my daughter got called out into the hall and I heard whispering. In the meantime, the nurse explained about the drugs she was going to pump into me through the IV port and exactly how chemo worked. She told me getting an IV port was a great decision, and explained how hard chemo is on the veins. Dominique came back into the room and Michael was called out to the hallway.
Great. Michael and that damn camera of his getting us all in trouble.
Eventually, the very nice head of PR came down to tell Michael that videoing in the room was not a problem at all, but I needed to sign a release form. Also, because of HIPAA and confidentiality, he was not allowed to video any of the patients (which we already knew). If we wanted to use any of the video for commercial purposes, that would also not be a problem, but we would have to fill out some paperwork. The hospital staff laughed nervously, explaining how this was all a first for them. They laughed nervously again when Michael took out his iPhone and showed them how anyone could do exactly the same thing he was doing, only without the expensive video camera, and without being hassled about it.
This was my “easy” chemo day, the day I would receive the drug Taxol–which is the drug that will be responsible for making me lose my hair. It was considered an easy day because it would take only a few hours to administer.
Benadryl was given first to counter some of the possible allergic reactions to the drug. I have only taken Bendadryl a few times in the past, in tablet form when my allergies were bad, and each time I felt like a drugged and dopey mess. I generally avoided it at all costs. This time the dose was much higher and it would be going straight into my veins.
The effect of the Benadryl felt like a palpable wave of dopiness, like being dunked in a huge vat of vodka. Within minutes my speech was slurry and I couldn’t finish a sentence without forgetting what I wanted to say. I felt drunk. The nurse told me I might want to just take a nap, but it was impossible because I couldn’t stop moving my legs. I later found out this was “restless leg syndrome,” caused by the Benadryl. My sympathies to anyone who suffers from this affliction. It drove me crazy. All I wanted to do was get up and walk around and make it stop.
After getting some additional saline and steroids, the chemo drug, Taxol, was finally hooked up to the IV tree and administered. The nurse put on her special blue chemo outfit (to protect her from the drug, which could cause, ironically, a higher risk of future cancer for herself) and I was ready to go home an hour later.
All in all, I thought it was pretty tame. I bragged about how “it wasn’t so bad after all” and how much easier it was than I thought it would be. I had heard nothing but horror tales of the difficulties of chemo, and it didn’t seem like that big of a deal to me.
I went home and ate normally that night, and didn’t seem to feel too many effects the next morning when I went back in for my next chemo treatment. This time it would be Cisplatin, administered directly into my peritoneum (abdominal cavity) via my second port, just under my left breast.
And this, my friends, would be an entirely different experience altogether.
I now have two more cancer related procedures under my belt and a new piece of plasticware in my body. Last week I had the IVC filter (aka the clot catcher) removed and a second chemo port inserted in my upper chest. Neither procedure was necessarily painful, but both were certainly uncomfortable and strange.
It was a very long day. My son and his girlfriend brought me to the hospital at 10:00am. We waited afterwards in the waiting room until 12:15pm, waited in the pre-op room until 3:00pm, and I was brought back to the room at 6:00pm. After recovering from the sedation for about an hour and eating a sandwich and chips, I got home around 7:30pm. Apparently Mondays are their busiest day and they had had no cancellations, like they usually did.
The nicest thing was seeing one of the two guys and the beautiful Kenyan woman who were there when the IVC filter was first inserted the night before surgery. J, the missing participant, called in sick that day. Having the same people there really helped make the procedure less scary. Amazingly, the nurse who was in charge of me during the procedures also knew one of the women in my running group. He mentioned Kim who was “always running crazy distances.” I asked if her last name was _____, and he couldn’t believe I knew her. It’s definitely a small world.
By the time I got to the room I was very tired of being on my back. I always sleep on my side and have never been able to get comfortable on my back. When they wheeled me into the room and closed the door to surgery, the door popped back open on its own. This happened over and over. The doctors scrambled and tried to barricade it with surgical equipment from the room, but the door wouldn’t hold. My nurse, A, would very calmly move the equipment the impatient doctors tried to jimmy-rig and calmly tell everyone that maintenance would be there soon and they would have to move it anyway. Then another doctor would get antsy to get started and move something else in front of the door, and A would very calmly move it once again. Over and over.
A maintenance guy finally came and unscrewed the hinge so they could open and close the door manually. Apparently there had been an override button that had been removed very recently that would have solved the problem from the beginning.
All of this took a full hour, and I was on my back on the hard, plastic bed the entire time.
Finally the doctors could get started with the first procedure: removal of the IVC filter. W, the Kenyan princess, swabbed my neck and chest with antiseptic and the “conscious sedation” was begun. I was told to turn my head to the left and not move, and a large paper sheet was put over my face and head. They made sure to tie it up in front of my face because I’m a little claustrophobic.
I had to wonder who was in charge of the music in the room. It was definitely some sort of classic mix, and there was a lot of Gordon Lightfoot and John Denver. Being a former JD groupie in junior high, I kind of liked it. Since I was already under sedation, I remember babbling to the doctors and nurses about how much my tough, inner city fifth grade students loved John Denver songs, especially “Take Me Home, Country Roads.” S said he didn’t think he’d ever even heard that song. (Really? Am I really that old?) I think the doctors thought I was a little weird, but I’m sure they’ve heard worse from patients under sedation.
After my embarrassing display of John Denver nerdiness, the doctors were on a mission to get started and GO HOME. I understood. It had been a long day and I was the last procedure of the day.
I just wanted off that uncomfortable table.
First I was given shots of Lidocaine, which hurts and burns a lot, to deaden the area on my neck. The procedure to remove the filter lasted about an hour and they even showed me what it looked like, dripping with blood, after they took it out. Pretty cool stuff. I asked if I could take it home but they wouldn’t let me. Liability issues.
After that they put in the port. Both procedures involve making a hole in the side of my neck and accessing a vein. For the IVC filter they sent down a wire into a vein in the middle of my chest, where the filter was previously placed, and they grabbed the little hook on the top and just pulled it out. It took a few tries (remember, they are leaning right over my right ear the entire time and I heard everything they said, every “ugh,” “aw,” and sigh).
Inserting a port seemed a little more involved and was a little more uncomfortable. After inserting a tube into a vein going up my upper right chest, that then goes down to the top of my heart, they made a small pocket below that in my chest and slid in the plastic port. Now all my chemo meds can be accessed through this port rather than having to have an IV each time.
I was glad when both procedures were done and I could go home. I didn’t realize how much I had been dreading the procedures.
A few hours later, at home, I looked at myself in the mirror and was aghast to see blue lines all over my neck, chest, and right shoulder. It looked like my veins had exploded.
I looked like a Smurf.
I thought maybe it was the contrast they had used for the x-rays. Then I got a little worried. I went online to do some super-sleuthing, but all I could find was something about calling the doctor if your lips and fingernails turned blue. Nails and lips were good. Skin, not so much.
I debated calling the on-call doctor. I felt okay. Nothing hurt. I decided to sit on the couch and do nothing.
Suddenly I had a thought. I went to the bathroom and wet some toilet paper. It was on my skin. The blue stuff was left over from when W had washed me down with antiseptic.
It all came off. I felt like the world’s biggest idiot.
I blame it on the sedation.