I really didn't want to follow my happy/ blessed/ bald is beautiful post with a depressing chemo post, yet I felt compelled to answer all those questions I've recently received.
So many people have asked me what chemo feels like and if the side effects are what you often see portrayed in the movies. For me, they've not been what I expected. I haven't barfed once, and for that, I am eternally grateful. I hate barfing more than anything. I will do anything to avoid it. If I hear, see, or smell someone barf, I join the party. I can't help it. Jeff has always been the official dog and child barf cleaner-upper. In the movies, everyone barfs on chemo. Dr. Moss prescribed a bottle full of pills named Compazine for nausea. I've taken three, but everyone is different.
As for the hair, or lack of it, I'm confused. My hair was coming out in clumps, and as you know, I shaved it. Well, now I have stubble where its growing back. WTF?! It feels like Velcro! So here I am in the bathtub with hairless legs (yay!), Dove armpits, and a Sinead O' Conner stubbly head. Because it itches and drives me crazy, I shave it. What I didn't realize until Liz's hairdresser Morgan shaved my head is that my head is one big cow lick! It grows in every direction. I'm not supposed to be using a razor because cuts don't heal when you're on chemo, and of course there's the risk of infection. But I'm really careful. Did you know that chemo patients can't even have a pedicure or manicure? Nails must be trimmed really short ( to avoid infection and possibly scratching yourself). I haven't had long nails in years but I miss those pedicures almost as much as I miss my hair.
Ok...back to chemo/Neulasta...
What a difference (no) Neulasta makes! You may remember from a previous post that Neulasta is a $6,000 injection given to chemo patients the day after their infusion. This drug's purpose is to pull the white blood cells from the bone marrow, therefore decreasing the likelihood of contracting a virus or infection. The most common side effect is bone pain. For me, that's the understatement of the year. Of course, everyone reacts differently to chemo and Neulasta, so my experience, at least with the Neulasta, I'm told, wasn't the norm. Thank God for all those other patients!
I've learned a lot about myself over these past few months. When it comes to physical pain, I thought I had a pretty high tolerance.. At least my neurosurgeon who performed my back surgery, my family doctor, and my husband who witnessed me giving natural childbirth have all told me so. I disagree. So, here was round one compared against round two:
Round one: Imagine having the flu, where everything on your body hurts. Your teeth are chattering. You're queasy but never throw up. You also have a debilitating migraine
headache and are then forced to ride the carnival ride (is it called the Round Up?) where everyone stands in a circle and it spins faster and faster until the floor eventually drops. Thanks to centrifugal force, you're pinned against the wall. For anyone out there who has had six too many drinks and have had the spins....same concept. To avoid terrible allergic reactions to the toxins in the chemo, you have been pumped with a massive doses of steroids. These make you a jittery, sleepy, exhausted insomniac. In one week, I slept a total of 8 hours.
Now, this is where the Neulasta side effects come into play...While curled up in the fetal position, every two or three minutes all day and night...for 48 hours, an anvil or wrecking ball would slam me in my neck, shoulder, and back. I would jolt each time. I was told that wherever you have had previous trauma (arthritis, broken bones, dislocated shoulder from falling out of a jacuzzi tub, etc.), you will feel Neulasta's effects there. Of course, I was still dealing with the swollen eggplant colored breast, adding to the discomfort.
Yes. This is an untouched photo of my eggplant colored skin.
Now for the good news. Dr. Moss is replacing Neulasta with Cipro, an antibiotic so there has been no wrecking ball or anvil beatings! Thanks to Restoril, I'm finally sleeping during this round!!! The nausea, headaches, Round Up ride, spins, etc. are back and are from the chemo. They only lasts 5 or 6 days.
For the remaining 15 days (until the next round), I'm more tired than usual but can definitely function. The "chemo brain", which Jeff is convinced I will use for the rest of my life as an excuse for losing at Trivial Pursuit or forgetting ice at the store, is driving me insane! I have always had this freakish ability to remember names, phone numbers, and dates (specifically birthdays). I have forgotten so many names and numbers since that first infusion, I've shocked myself. It's a big source of frustration for me and I pray that the brain function completely returns.
By the way, Moss says that the steroids shouldn't last longer than a week, and thinks that my insomnia is stress induced. You think?
Jeff and I were just discussing that it had been 104 days since my diagnosis. It seems like a lifetime ago. To distract myself, I watch TV and sometimes become angry and resentful watching the cancer-free drama queens worry about their split ends and their muffin tops spilling out over their skinny jeans. Meanwhile, I cover my freezing cold bald head with an elf cap (makes me laugh), pull up my flannel pajama pants over my muffin top, and thank God I still have eyebrows and eyelashes. It's the little things that keep us going. :)