Even though I was born and raised in Indiana, I have (happily) never been to the Indianapolis 500. Happily, I say, because I’ve never had an interest in cars. I am happy as a clam in a the kind of cars that my grandparents once drove. No, not the classic vintage variety. I’m talking about the ones with a uni-front seat. Remember those? The ones where the entire seat moves up or back when adjusted? Yeah, that’s how I roll.
However, Finally Five (our daughter), inherited every car-loving gene from the HOTY (Husband of the Year). Thanks to Finally Five, I have seen the Disney movie Cars 187 times. (I admit to loving it and being excited about Cars 2 coming out this summer!)
Though I’m not a car racing officianado, thanks to the contagion of Indy 500 fever of my youth and Finally Five’s obsession with the movie, I understand the concept of and need for a pace car in a race: to provide steady and consistent speed for a “rolling start” before a race.
What is the point, you ask? Well, because I believe that FBC patients need a pace car for reentry into life.
Let me explain. In the past few days, I have begun to feel more and more human (though I still don’t feel anything on the tips of my fingers or toes thanks to nerve damage from the Taxol). Feeling an inkling of energy has been an incredible Silver Lining, especially because since the surgery, I have felt unending fatigue.
This isn’t the “I need a cup of coffee to perk me up” kind of fatigue. This is the “I couldn’t possibly get out of this chair and walk 5 feet to my bed” kind of fatigue.
Clinically it is referred to as Cancer-Related Fatigue (CRF). Fatigue is an obscure symptom that, for me, has manifested itself as an extremely frustrating state of chronic energy depletion.
Fatigue has led to loss of productivity, which (truth be told) has rocked my self-esteem. Fatigue has also resulted in physical limitations (e.g., no longer being able to race up a mountain or even walk around the block), emotional consequences (e.g., at times feeling like The Biggest Loser – and no, not in the “I lost 100 lbs” sort of way), and psychological burden as it relates to my quality of life (e.g., the prolonged stay on Isolation Island has not been good for a social creature like myself).
Certainly the anxiety and fear omnipresent at the time of my diagnosis drained me of energy, thereby laying the foundation for fatigue. During recovery from surgery and chemotherapy, I have hoped that the loss of energy and endurance is a time-limited price to be paid for a cure. I continue to hope.
I would have to say that the most distressing part of fatigue is the symbolization of progressive debility and waning of life. I love nothing more than going out. To parties. To lunches. To lectures. To dinners. Anywhere and everywhere. Little groups. Big groups.
NOT being able to do these things that I love, especially not being around people, has had a cumulative effect on my psyche. Depressing, huh? Try living it.
So, as you can imagine, with today’s budding of long-lost energy, I was super excited (elated, actually) to reengage with the world (Silver Lining!).
However, I decided to engage with the ENTIRE world. I revved my engine (actually I had to use jumper cables to restart it first) and jumped in the race. Without a pace car. Without a rolling start. Bad, bad idea.
I went to two parties today and had several things lined up in-between. I knew that not having a rolling start was a bad idea at brunch this morning. Before noon, I managed to lose Finally Five twice and bite the HOTY’s head off a minimum of three times. And, though I was THRILLED to see friends and connect with the world on a beautiful day, it was too much too fast. I did not pace myself at all. And now I am paying the consequences. Which are not pretty.
I learned a valuable lesson today: recovery takes time. A lot of it. It cannot be rushed or forced. Recovery takes gentle patience. Oh, and I still have 25 rounds of radiation coming up. You know what the #1 side effect is? Yep. Fatigue.
What I know for sure is that I need a pace car. And a rolling start for reengaging. The faster I go now, the longer the recovery will take. Thanks to the ramifications that I am now feeling as the result of a day that included too much too fast, I will slow down. I will think twice before I say yes once. I’m grateful for this Silver Lined lesson.
Very often a change of self is needed more than a change of scene.
~Arthur Christopher Benson
It's the most extraordinary feeling. Hard to describe and challenging for others to comprehend. While I am fortunate to have been spared Chemotherapy, thanks OncoDx more than I can ever say, I have had half of my radiation, 30 Grays, and 30 more, or three weeks Monday through Friday, to go. And I am shattered, better on the days I do not get nuked, but everyday when I look over the day I am baffled by how little I have done.
I had surgery, segmental mastectomy, I hate the word "lumpectomy", February 16, developed cellulitis, went on antibiotics, had a terrible asthmatic bronchitis for four weeks courtesy of the Sweet Gum trees and and finally cut back to working four days a week in a very busy University Neurology Outpatient Department. Bless my wonderful Family Medicine doctor. Well, I took three days for the surgery.
I have now been on full medical leave for a week, and finally feel a tiny bit less bushed. No one can explain it to me, my Rad Onc Doc feels it's related to all the cytokines released by the radiation, and most friends response is "but you didn't have chemo". I live alone and while my wonderful 26 1/2 daughter has been back and forth, she lives 250 miles away up the Eastern Seaboard, and has a law practice that needs her attention too, her siblings still live in the Deep South but have devolved the responsibility of my care onto her. I have finally said "Uncle" and asked my older sister to come from London to see me through the last part. She is selling her house and buying a new one in early June, but is coming to help me. I can't wait.
I've had many offers of help bit only one friend just showed up and mowed, whacked and blew my yard. People do offer, but how can you ask them to wash dishes or go to the store, or hunt the dust bunnies? I can't.
I've have been out of the house to see a Picasso exhibit but that was before the radiation started, now I doubt if I will ever go anywhere again. I was invited to join friends yesterday but despite their offer of a recliner, I couldn't lie around at someone' house and I was frightened I might not be able to drive myself home. Just getting to radiation every day is a major task.
And here is the kicker… I am told that regular exercise will combat the fatigue. I am assuming that not many of these people have had FBC because the thought of the gym and a long hike sounds amazing but, right now, about as easy as an ascent on Everest. I just hope that when the Short Term Disability folks decide that I am ready to return to work, and it will be the clerks rather than my wonderful doctors, that I can provide the care my own patients expect. If you find that pacer car… Let me know where I can get one, and perhaps my dogs can have a real walk.
No need to publish this diatribe but even without chemo I am feeling as though life will never be the same. They promise it will get better but when? All the best to you, I read you every day and keep hoping that you and your precious family will emerge soon from this trial.
🙁 Sounds like it is time for a couch glue session. Get out the peppermint lotion and The September Issue. I will be right over!!
"I learned a valuable lesson today: recovery takes time. A lot of it. It cannot be rushed or forced. Recovery takes gentle patience." How true!
I'm a lot like you, in the sense that my mind wants to keep on doing, but, my body just physically can't at times. Before cancer, I battled Chronic Lyme Disease/co-infected with Mycoplasma & Rheumatoid Arthritis.
…I just came back from a long afternoon walk with my dog. Yesterday, I couldn't for the life of me.
Best of wishes towards your recovery~
I was diagnosed with Breast Cancer in the beginning of this year. My recovery time will be at least another 2 years… 6 more cycles of chemotherapy: 2 more of Taxol, 4 of Adriamycin/Cytoxan & further surgeries… (I'm a BRCA2 carrier).
I enjoy your writings so much! Your blog should get a huge reward for how excellent it is.
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