Had I fully remembered the experiences of four years ago, it's quite possible I would have paused long and hard before agreeing to hitch a ride on this highway again. At least I would have acknowledged and honored how sucky this next year was going to be, before jumping in with both feet and shouting, "Let's get this show on the road!!"
And now, we can no longer run or hide - we just have put one foot in front of the other.
Last Tuesday was the first of six scheduled rounds of chemotherapy. Treatment itself went off without a hitch, yet the whole experience was incredibly surreal. "I've been here before," I kept thinking as I was weighed and measured, finger-poked and port-accessed, as Ken and I walk to Chair 8 in the infusion center. I wondered exactly how I'd gotten here again; I look around and wondered how any of us get here. It's a challenge to jump off the carousel of circular thinking, and sometimes I just shut down because I really don't want to think about it anymore. Tired of dealing with it. So frickin's over the whole thing already - and dammit, We've Only Just Begun.
I snuggle into the warm blankets in my chair and repeat my full name, birthdate; full name, birthdate; and am hooked up to the winking, blinking machines, infused with antiemetics and saline, and enough steroids to beat Rhonda Rousey with both hands and a leg tied behind my back, and then,
There's the crystal clear bag of the first of two drugs, Taxotere.
The standard chemotherapy regimen for TN is Adriamycin and Cytoxan together, followed by Taxol. Adriamycin (or the "Red Devil" as it is often referred to, is administered via a cartoonishly large syringe of what looks like Cherry KoolAid, only far less tasty and more dangerous) has a maximum lifetime limit due to cardiotoxcity, and I reached that limit four years ago.
And so instead, the Weapons of Choice this time around are Cytoxan and Taxotere. Cytoxan will cause my hair to fall out (which gives me a reason to purchase adorable little newsboy caps. Positive reframing, yo), and for about 10 days everything will taste like I've got a mouthful of metal: coffee, water, apples, salad, chocolate, - everything tastes like copper dipped in nickle, wrapped in brass (or so I suppose). Coupled with the mouth sores, eating is (for a change) my least-favorite activity.
Taxotere is a kissing cousin of Taxol, derived from the Pacific yew tree. Often Taxol is given on its own (or in conjunction with Herceptin for Her2+ BC), on a weekly basis for 12 weeks. One of the SEs of the taxanes is potential for permanency (and not in the way my SW friends are thinking). Potential for permanency, as in - hair loss and neuropathy. Studies have shown that exposure to deep cold can significantly lessen or even eliminate these two potentially permanent side effects. The FDA recently approved the use of "cold caps" to greatly reduce loss of hair during chemotherapy; "freezy" gloves and booties are also available to reduce incidence of neuropathy. These items use hypothermia to constrict blood vessels, impeding chemotherapy from reaching those areas. While the whole point of chemo is to mop up any stray cancer cells that may be moving through the body, it is believed that icing these areas is safe in certain circumstances.
And so instead, the Weapons of Choice this time around are Cytoxan and Taxotere. Cytoxan will cause my hair to fall out (which gives me a reason to purchase adorable little newsboy caps. Positive reframing, yo), and for about 10 days everything will taste like I've got a mouthful of metal: coffee, water, apples, salad, chocolate, - everything tastes like copper dipped in nickle, wrapped in brass (or so I suppose). Coupled with the mouth sores, eating is (for a change) my least-favorite activity.
Taxotere is a kissing cousin of Taxol, derived from the Pacific yew tree. Often Taxol is given on its own (or in conjunction with Herceptin for Her2+ BC), on a weekly basis for 12 weeks. One of the SEs of the taxanes is potential for permanency (and not in the way my SW friends are thinking). Potential for permanency, as in - hair loss and neuropathy. Studies have shown that exposure to deep cold can significantly lessen or even eliminate these two potentially permanent side effects. The FDA recently approved the use of "cold caps" to greatly reduce loss of hair during chemotherapy; "freezy" gloves and booties are also available to reduce incidence of neuropathy. These items use hypothermia to constrict blood vessels, impeding chemotherapy from reaching those areas. While the whole point of chemo is to mop up any stray cancer cells that may be moving through the body, it is believed that icing these areas is safe in certain circumstances.
The drawbacks tend to be the cost per treatment (around $100 for the gloves or the booties, and about $400-$500 for the cold caps) - and the pain. My clinic offers the gloves as part of my treatment, but not the booties. And so we begin the Taxotere portion of our program by donning the Oven Mitts of Ice:
 |
| Time to make the donuts! |
Because I'm worried about my feet, Ken and I rig up our own Ice, Ice, Baby Booties by placing refreezable ice packets in the bottom of oversized men's hunting socks, then sliding them over my own thin running socks (just to keep the ice from burning my feet). After about 3 minutes it feels like I'm standing knee-deep in a snowbank wearing wet mittens and boots during an arctic blast, and I still have the driveway and sidewalk to shovel. The pins and needles painfully give way to numbness, and I squirm and whine a little in an effort to keep myself from ripping these frozen items from my hands and feet.
Once Taxotere is complete the gloves and booties are removed. My fingertips are pink; I rub them on the warmed blanket on my lap and start to feel the burn as they warm up. Dammit that hurts......but remember, breathe, it's a small price to pay in the end...
We move on to Cytoxan, another beautiful crystal-clear bag hanging next to the rest. They all look so innocuous and un-dangerous. "Just the name Cytoxan sounds like poison," says my friend K. Because it doesn't hurt or look ugly, it can be hard to remember that I'm spending four hours having toxins pumped into my body.
And just like that - we're all done!! One down, five more poisonous sessions to go.
The nurse pops the needle out of my port, and says, "Are you ready to meet The Button?"
I grin like a schoolgirl; I am both nervous and excited to meet The Button. Another nurse pops in to our little area (now wrapped closed in curtains as I'm about to expose parts of my body - directly facing the open window across from me...) and asks if she can watch. All three of us are giggly, and I can sense that Ken is fascinated that I'm about to become a science experiment in my own mind.
About the size of a box of dental floss, The Button contains an injectible dose of Neulsta, and will automatically administer the medication 27 hours after the end of chemo. Four years ago I had to return to the doctor's office the day following chemo for the injection, which meant more time off work and additional inconvenience. Now, The Button does this automatically!
Once Taxotere is complete the gloves and booties are removed. My fingertips are pink; I rub them on the warmed blanket on my lap and start to feel the burn as they warm up. Dammit that hurts......but remember, breathe, it's a small price to pay in the end...
We move on to Cytoxan, another beautiful crystal-clear bag hanging next to the rest. They all look so innocuous and un-dangerous. "Just the name Cytoxan sounds like poison," says my friend K. Because it doesn't hurt or look ugly, it can be hard to remember that I'm spending four hours having toxins pumped into my body.
And just like that - we're all done!! One down, five more poisonous sessions to go.
The nurse pops the needle out of my port, and says, "Are you ready to meet The Button?"
I grin like a schoolgirl; I am both nervous and excited to meet The Button. Another nurse pops in to our little area (now wrapped closed in curtains as I'm about to expose parts of my body - directly facing the open window across from me...) and asks if she can watch. All three of us are giggly, and I can sense that Ken is fascinated that I'm about to become a science experiment in my own mind.
About the size of a box of dental floss, The Button contains an injectible dose of Neulsta, and will automatically administer the medication 27 hours after the end of chemo. Four years ago I had to return to the doctor's office the day following chemo for the injection, which meant more time off work and additional inconvenience. Now, The Button does this automatically!
The nurse "activates" the button by injecting the Neulasta into it. Once complete the button blinks and beeps. She peels the paper off the sticky tape surrounding the button and sticks it to my abdomen, all the while the beeps and blinks are getting faster. "Wait for it," she says. We're all gleefully peering at this little Matrix-like thing on my belly, waiting for it to animate and crawl over my stomach and burrow into my belly button or something. Instead, the beeps and blinks become one long sound and color, and - *poke* - the needle deploys into my stomach.
I jump a little and cry, "Eeeek!" - more out of surprise than pain (honestly, it hurts less than those stupid finger pokes). We all smile and laugh and marvel at the wonders of technology.
That was really cool.
27 hours later, while leading a teleconference on speaker phone I hear ever-increasing beeps emanating from.....where? I've forgotten about The Button, and I can hear someone on the other end of the line say, "Who's beeping?" I check my phone, my computer, and give up, thinking it must be one of the grandkids' toys or a smoke detector or something... The beeps come faster, louder, and suddenly it's one long beeeeeep....and I remember! I lift my shirt (teleconference, remember?) and see that the button is doing its job, injecting the medication. Over the next 45 minutes it blinks and beeps and when the line reads EMPTY the light turns red, and the dose is complete. I peel back the tape, gently grab the button between my fingers and - *wincing* as I prepare to PULL THE NEEDLE FROM MY BELLY - *bloop*. It's a flexible plastic needle, not a rigid metal one, and so it simply slips from my skin like a small sliver.
The first day of chemo has historically been the easiest for me, and this time appears no different. Steroids combat the inflammation that causes pain, and the chemicals haven't had a chance to really get in there and take hold just yet. I work for a few hours in the afternoon after chemo, but fall asleep for a long nap late in the afternoon. I realize I'm emotionally exhausted and once it's all over with, I kind of just fall apart. I relish this nap time as I've been on steroids for two days already, and sleep has already been an elusive bitch.
I wake on Wednesday to another snowstorm, and take advantage of my director's offer to work remotely when necessary. The steroid buzz makes driving a bit of a challenge, and I can feel the slide into side effects starting (so much for coffee this morning), but I'm able to power through the day fully functional. Today will be the last day of steroids, however, and I know the jump off that cliff will be hard and probably painful.
On Thursday I return to the office; about noon I start to feel the hard-core side effects kicking in. Turns out that Taxotere gives me the same SEs as Taxol did before. It feels like having a really bad case of the flu: body aches, sensitivity to light and sound, sore throat, bone pain - all that fun. In addition to the Taxotere are the SEs from the Neulasta, which include bone pain, muscle aches, and flu-like symptoms. Neulasta helps grow white-blood cells in your bone marrow to ward off infection, which creates the feeling of your bones kind of growing and shifting. By 3:00 on Thursday my entire skull is in the grip of a monster hand, pushing and squishing and squeezing.
Time to go home.
Friday I wake to...well, I'm still awake because I never really slept for longer than a few moments. The pain has travelled to my long and big bones, including forearms, femur and hips. I can't turn my neck without wincing. I lay on one side...then flip to the other...then curl up in a fetal position. I'm waking Ken every other minute with my restlessness, but it's hard to find a place to rest that will allow me to sleep. I've chewed my maximum dosage of NSAIDs, and will just have to manage. This is the SE I was most afraid of - and yet, probably most prepared for. At least, as much as I could be, given that I had truly forgotten just how intense and awful these moments were going to be.
And like a Texas hailstorm, I can't make it stop.
Friday is the worst, by far. I work from home again, but between the pain and the steroid drop I am inefficient at best. The sun is shining and I make my way out for errands and lunch, but return home feeling broken and exhausted. I finally break down and take only one pain pill left over from my surgery. I've avoided this because - well, because another SE is related to "regularity", and let's just say that I'm already backed up farther than I-94 during orange barrel season. I hesitate to take a pain pill that will contribute to that traffic jam. By now, my legs are bending backwards and my hips are exploding. I walk into the kitchen and my right knee gives out gently. My left ankle swivels with every step and I feel like a marionette with most of her strings cut and dangling.
I sleep; I cry; I whine at the Cancer as if it was standing in front of me ready to take a beating. "You bitch," I say, crying and railing. "You can't do this to me again. I can't do this again. I can't. I just can't." And it's true, but not true, because I know I can. I'm still angry that I have to. And yet I'm reminded of those who are battling this a third time, a fourth time, will battle for the rest of their lives because this IS their life. And I realize I'm still blessed to be able to fight.
By Saturday I feel the sun parting the clouds. I venture out to spend the afternoon at the vineyard with dear friends who are also survivors; we celebrate the snow and wine and good company and being alive, and it is joyous.
Today is another day, and it is getting better. Ken and I enjoy waffles and coffee (and it only tastes like $0.16 of pennies this time) and some quiet time just *being*. I'm looking forward to a return to normalcy over the next few days.
I'll collect hailstones again in a couple of weeks, but until then - I'm just walking along the highway, delighting in the sunshine.
Oh Nancy, I'm sorry you are going through this and doing it again. It has to be exasperating to have a repeat of this chemo. This truly sucks! I'm one of those mean girls who would like to plop some rotten people I've into the chair to take your place. 🙁. I'm praying, and I'm running and yoga-ing with dedications for you and your healing and good future health. I love you and wish we lived next door to each other. You can tell my brother I said he is in charge of all the domestic work, including dusting the chair legs and ledges ( he will know what this means) in your house while you go through this sucky ordeal. (Hugs)!
ReplyDelete