Dealing with my new normal
I awaken to the familiar darkness of my bedroom. It's still, cool and quiet with the open window providing a steady breeze. A familiar buzzing sound catches my attention, and instinctively I turn to my right. That's when it happens.
On any regular morning, I'd just roll over, grab the phone, shut the alarm off and relax back in bed, capturing a few extra minutes of peaceful bliss, but this morning was different. Very different. My brain asked my body to respond to a simple request and it couldn't. No warning, no announcement, just a one hundred and eighty degree change in forty eight hours.
Realizing something was wrong, I immediately attempted to move, only this time the goal was to swing my legs over the side of the bed and sit up. My body responded this time, but instead of the easy slide and a graceful rise, it was gradual painful pull up. I sat there on the edge of the bed momentarily trying figure out what was going on, trying to identify what I was feeling, but there was no familiar experience to reference. Overnight my body had stiffened up to what I'd like to call a mummified state, after receiving my first dose of chemotherapy and the immune boosting Nuelasta shot, I had morphed into a living mummy. The Nuelasta shot is normally given to chemotherapy patients a day after treatment to assist with the protection of the immune system. Nuelasta acts as a bodyguard, anti virus agent, protecting the body against nasty infections. The downside is that it can cause one to feel like their body has turned into a cardboard box laden with twenty pound rice bags. radically changing mobility, My whole world had just turned upside down.
As if on cue the phone rang and my mother's concerned voice filled the room as I pressed down on the speaker feature. "How are you" she asked, attempting to sound cheery. I gritted my teeth and took a deep breath. My lips barely parting, I barked out my response. "I'm barely able to talk" I said, "I feel like the Incredible Hulk!" "I am stiff as a board and I feel as if my bones are stretching, like I'm trying to grow out of my own body!" My mother sounded as if she were crying and urged me to go to the E.R. "No, I snapped, I'm not going anywhere!" Thinking I just needed a dose of pain medication, I ended the call with my mother and stiffly shuffled towards the medicine cabinet. Big mistake.
- Tip #1 - When in doubt or pain and you are under the care of an oncologist, contact the doctor's office immediately. So the fool in me took over as I downed narcotic pain medication (leftover from the lumpectomy surgery I had in March), which had no effect at all on the gut wrenching pain that I was feeling. I nearly passed out several times during my subsequent return to work, on the road and by the grace of god toughed it out until the symptoms subsided 7 full days later! I can remember it taking all the strength I possible had to stand upright. The worst was when I was with a a mother of a student and just lost it, broke down crying because I was in such excruciating pain. She had no clue what was happening (as I looked normal and I'm sure I totally freaked her out!). What was I thinking, trying to maneuver as if chemotherapy and the side effects, were just another day in the park. Not respecting the power of the chemical and not acknowledging that I was not superwoman did nothing to create a supportive environment. I was really just making things worse. Had I just called my oncologist's office she would have made the adjustment to my medications and found a remedy that would offset the stiffness and brutal bone stretching pain that I endured.
- Tip #2 - Accept the help and don't be to proud to ask. Someone once told me that "When you don't ask for help, you are blocking someone else's blessing, because they want to help you". My best friend realized that I had been out of communication for days after my first round of chemotherapy. Luckily she sent her husband (at the time) over to visit me. size me up, and report back to her in real time, what was going on. It wasn't like I did not have help, I just did not want it. I did not want to be bothered, and I was just too tired, irritated, to even have a conversation. I pretty much banished everyone from my site, I really just wanted to be quiet and very still.
Now my relationship with my best friends ex husband was always a little bit of love, a little bit of disdain, with a dash of mockery mixed in. We took turns over the years relishing in each other's mishaps, but on this day he proved to be one hundred and fifty percent dependable. There was no long conversation about how I was feeling or what chemotherapy was actually like. There were no questions about what my plan of attack would be and what my future looked liked. Instead he put aside the usual sarcastic, comic banter (as I was always the butt of one or more of his quick witted jokes) and sized up the situation with my meek response to his greeting (a NYC standard) "So what's up with you?" Realizing that I was struggling just to be in the moment, he decided I needed a meal and took a quick drive over to the east side of town and treated me to one of our favorite spots, Patsy's Pizza. I didn't have to have a chat, I didn't have to be funny. I didn't have to be engaging, I didn't have to explain. All I needed to do was sit back, not focus on the fact that I felt like hell, and let someone help me. Plain and simple.
Eventually the side effects subsided (I was never so relieved) and I was able to get back up on my feet, and with the help of the adjustments my medical oncologist made and enjoy a few weeks of relatively good health, before going in for my next chemo session.
Life has changed
Next Up! Hair..options and dealing with changes.