I woke up pooped on Monday and I’d earned it. Sunday consisted of Other Sarah taking me to get a pedicure, spectating at some bike races with Jana and then Jill Hill and Ryan and their kids made a wonderful summer dinner at my place. It was a fun, exhausting day and I felt it.
Monday morning I talked with my local oncologist and we decided that I would start the herceptin ASAP. That afternoon I headed to the cancer center to get the infusion. Their computer system was down and Kim and I sat in the full waiting room and got caught up. Forty five minutes later, they called my name.
I entered the chemo room, a beige room full of mostly pale, tired, weak looking patients and a few nurses wandering around in bright pink tops. Twelve chemo recliners, all occupied but one. Nine women, two men. Most are bald with something soft to cover their scalps. A few have blankets. Some snooze. All are hooked up to IVs and drip bags with the exception of the people that are just here to “hold hands”. There are six of them. Half of the people getting chemo have large bottles of soda from which they’re drinking. Our vinyl recliners are lined up to face each as if we’re preparing for some sort of pathetic match of Red Rover. People are mostly quiet and I can hear a faint TV in the background along with the incessant beeping of the infusion machines.
My back hurts. I’m not sure why. I don’t know if I’ve thrown my sacroiliac out (I can’t imagine how with all of the off-center limping, twisting and wrenching to move and attempts at carrying stuff), if the cancer has eaten away at enough of something that part of my back has given way or something else. It feels like a screwdriver is being stabbed into my lower right back during certain movements, sometimes just slight movements will cause a shooting pain and a wince. It has far surpassed my leg for pain and the only reason I’m still taking acetaminophen. It takes some excruciating squirming to get out of bed and if something drops on the floor, it may as well have dropped into a black hole, at least until someone comes to rescue it/me. But my leg is improving every day…I’m almost ready to kick people again!
The nurse asked if this was my first chemo. Nope. Just my first time in this facility. I’m tired. I have other things to do today. I’ve been here an hour and they haven’t started the infusion yet.
I started taking the tamoxifen, an oral medication, on Monday, too. The herceptin, which is an infusion and why I’m in the chemo room, is considered “generally well tolerated”. It has side effects but not some of the typical havoc-wreaking chemo side effects such as losing my hair. I guess “generally well tolerated” means that I can have heart damage and that I need to have an echocardiogram every quarter to monitor potential damage. If we see evidence that this drug is backing off the cancer, I’ll take it indefinitely. I can look forward to this infusion every three weeks for the rest of my life or until it’s ineffective.
I recognize the chemo the woman across from me is getting; adriamycin, aka The Red Devil. It’s given by “push” injection during a chemo infusion since it’s so thick. The nurse slowly, manually depresses the plunger to send the thick, bright red drug into her vein. I remember it well; how it made me feel, ten years ago, as it entered my blood stream and flowed all through me, how it took me down. How I felt like crawling into bed, face down, and crying and sleeping until I could just pass through all the days until it ended. How it drove me to the edge physically, mentally and emotionally. My oncologist at the time told me “Never forget we’re trying to kill you.” Nope, I couldn’t. They took me to the edge and held me there. None of my senses could escape it. The chemo burns, from my fingers all the way up my arm, burnt from the inside out; purple, swollen to twice the size and blistered. The infection in my mouth that felt like I’d had boiling water poured in it and down my throat. And then the steroid mouthwash to “help” it. You could see evidence of it, burnt, all the way through to my cheeks. Food tasted weird. Things smelled bad. My eyesight got worse with the steroids that accompanied the chemo, not to mention the heart palpitations. My fingertips started to get neuropathy. It damaged my heart with every dose; permanent scar tissue. I looked gray and bald and sick and unrecognizable to myself and most others. It is an unnerving feeling looking in the mirror and not recognizing the creepy looking stranger staring back at you. The prevalent look of fear and pity in other’s eyes. That was the worst. I couldn’t escape it. I could see it in the eyes of people who pulled up next to me in cars; their expressions would go dark. I could see it in a mother’s eyes in line at the grocery store as she pulled her children closer while not taking her eyes off me. I could see it in loved ones’ eyes as they simultaneously sensed my potential encroaching death and their own mortality. They didn’t always know it but they were scared of me, they were scared of the death that I was wearing as a cloak. I could sense their immediate relief as they got away from me. They felt compelled to be nice to me but for some, that was driven by their sense of “thank god that isn’t me”. I made it through that time. At least I thought I did. 10 years was a safe number, right? I guess my oncologist that said “I’ll never consider you cured, just in the clear for now.” was right on the money.
“Do you have a port or do I have to poke you?” You have to poke me. Let’s get this party started. I asked what was in the cocktail besides the herceptin, as I always do, and evidently a thirty minute infusion of Benadryl comes with it. Can’t I just take that orally? Not the first time. You can discuss with your doctor after that.
Two hours later, I was alone in the room and ready to be unhooked from my beeping machine.
Kim was waiting to shuttle me back home and even had a present for me! I guess the comment about wearing a swimsuit coverup for four days prompted her to buy me another outfit…a little coverup dress that zips up the front and has pockets. Perfect! Now I don’t have to step into it or shove my phone in my bra. And I’m up to three outfits!
As soon as I arrived home, I had another “appointment”. Since Nurse Jill deserted me for vacation (the nerve!), she set it up for another medical pro to come over and remove my stitches. Thankfully, he’s as effective and wacky as she is and he took care of them in short order with hardly any screaming or eye gouging on my part. He also said I didn’t need to take off ALL of my clothes for him to remove the stitches but I insisted I didn’t want anything to get in his way. Thanks, Marc!
As soon as he left, Nancy showed up to bring me dinner….Canadian walleye caught by her on her family vacation along with fresh veggies. Another spectacular meal and great company. As soon as she cleaned up the kitchen and packaged the leftovers, she was on her way and I crawled into bed. I was spent and my back needed to find some relief.
Tuesday morning brought a visit from Heather and Lisa, after they fired the appropriate warning shot, with a cup of coffee for me. Lisa crashed her bike in the State Criterium Championships on Sunday, went down hard on her right leg and then went on to win the race. Incredible. She crawled into the lounge chair next to me and I noticed she was moving almost as exactly as I was, very precariously with the right leg. I gave her my fancy-schmancy ice pack and some dressings but I really should’ve loaned her Nurse Jill’s swimsuit coverup. That thing is the bomb for beaten up thighs! It was good to see them and hear of Heather’s upcoming wedding plans. She also offered for me to ride the tandem with her fiancé, Rich. Sounds like a good idea to me…what could go wrong?
Troy stopped by to check on me and my lawn and Jana dropped off some goodies and took care of a few things that are difficult for me. Cindy checked in to see what she could do. One of my neighbors reached out to me as she sensed something was amiss. She just happens to be a former oncology nurse. Again, I am so fortunate. Lots of people who care, lots to make sure things are OK. Now, who’s going to clean my toilets? I’m not even going to mention the shower until that person is safely trapped in my house…
Speaking of toilets, Jana came back this afternoon with a present for me. A raised toilet seat! My back issues have complicated the simplest of things. I’ve never been so excited to see a toilet seat! I took it for a test drive. Thumbs up!
Here’s a picture taken right before the bionic leg to wipe that last image out of your head.
Now I’m off for a walk…up and down the sidewalk. Maybe twice! We’ll see how many kids I can shake my crutch at…