(These random thoughts don't technically qualify as a Breast Cancer Diary. A diary requires a chronology, consistent entries and the energy to put words on the page. None of which I was capable of for much of the past year. But I did want to store certain thoughts. So when I could, when doctors' appointments, treatments, demoralizing fatigue and Chemo Brain would permit, I wrote down these thoughts.)
I used to think Big Picture was better. The view from 30,000 feet, if you will, was the Strategic Thinker, the Big Picture Thinker. Details were trifling - for someone else. Now I know differently. One tiny undetectable cell can foul the whole system. Ignoring details is lazy.
In its most basic form, cure for cancer is Cutting, followed by Poisoning, and then Burning. I get science fiction writing in a whole new way. Who willingly shows up to be poisoned and burned week after week? I now understand stripping down the layers.
Would I have shown up for leeches?
In January the news that I’d be tired until October seemed inconceivable. After the big sleep, October has arrived and it is still inconceivable. The year is long. The year is a blink.
Dismissive, defensive, egotistical, inappropriate, uncompassionate. If your surgeon’s name rhymes with skunk, run. Her technical skills are fine but she is a lousy human.
Port surgery on Monday, Chemo on Tuesday, and my mother-in-law, Della, died unexpectedly on Saturday. Sympathy cards are keeping the get well cards company and I wonder whose life I stepped into. Surely it this isn’t mine.
I have learned “tired” in a way I did not know possible. Chemo-tired is not the kind of tired cured by caffeine or the good kind of tired after a hard workout. It’s the kind of tired that sucks the life out of you. The tired that makes your brain fuzzy. It makes you stumbling-down-tired. It is the tired that comes with not enough oxygen and no means of replenishing it. Sleep helps, but even then one wakes up tired. It is Relentless Tired.
The infusion room walls are painted some institutional color and sport a few lackluster prints that look like they came out of a decent hotel. The floor, which is the only interesting feature in the room, is wide pine plank. For three months multiple old computers littered the floor before someone bothered to cart them off. Patients sit in recliners with feet up because it is easier to sleep. The brown recliners are the kind you’d find in a home furniture store and are more comfortable than the blue recliners which are tall and straight and have wheels and were designed to reside in an institution. The chairs are arranged in pairs and share a TV table, a box of generic tissues, and a plastic waste basket. The room is cold so everyone brings a sweater or even a coat and sometimes asks for a thin white cotton blanket to help keep warm. The space is cheerless.
I cannot believe “oncologist” has become part of my daily vocabulary.
I know which doctors have well-run offices and which ones do not and which ones simply don’t care. While my oncologist has a good medical reputation, the time management is lousy and the wait time is long. So far I have resisted the urge to yell, “Heeellooo! Somebody please help! People are dying in here!”
Mascara is only worn by brave, confident women. The second wave of tears washes away the raccoon eyes of the first wave of tears.
I was patient number 29,998 until the office got bought out by the hospital which came with a new computer system and a new number. They still don’t know my name.
Walking along the bike trail, I didn’t trip the runner with pony tail swinging rhythmically in her wake. But only because she was already past and I couldn’t.
Grace. I guess it’s a good thing one can keep searching. There are moments on and off. Lately it has been off. Grace is hard to find when you need her most.
Generally when I see the doctor, I have a list of questions, but on one visit there was just one question: why he became an oncologist. He gave pat answers. “His grandmother died of cancer.” “Oncology was always it.” “What better way to help people?” What I really wanted to know is what makes one person show up to poison another person another day after day. And yet I know the real question is why do I sit in a chair and let them?
My daughter Jordan tells me that I have “tennis ball head” but that might be premature.
After chemo I get the toilet all to myself for a couple of days. Put the lid down and flush twice so as not to splash chemo drugs on anyone else. I follow this rigorously as we have two cats and mercifully Bud the Unsanitary has not become Bud the Bald.
Chemo stretched over 18 weeks. In that time I had 24 visits to the oncologist’s office. The oncologist is never on time, so I quickly learned that a ninety minute visit would take three hours. And a long day that showed up as a three hour appointment on paper meant five hours in real time. In those 18 weeks I easily lost 24 hours simply “Waiting for Barreau.”
Sorry Connie, I dropped the bomb on you. You were making campaign calls and I dropped the Big C. I didn’t mean to make you feel bad.
Chemo came with considerable secondary and tertiary drugs. Our already too small medicine cabinet, which can’t handle much more than a bottle of Tylenol and cough syrup, was completely overwhelmed. So I cleaned out a vanity drawer and dedicated it to all meds chemo-related. This week it felt pretty good counting down the pills and discarding empty plastic containers. As prescriptions were used up or no longer needed, the drawer emptied so I decided to reclaim it and give the medicine cabinet an overhaul too. After a good cleaning, I started to restock and realized that, once upon a time, the now empty pill drawer had been filled with hair brushes.
Sean is checking into palliative care. We all knew this day would come, but my heart is breaking.
I don’t like wheat or popcorn. Spaghetti and bread are disgusting. Crackers don’t work either. Finally Carb-Free. Ha. I have not craved chocolate in months.
It’s July and this is the first week I’ve spent at home with no doctor appointments since the first week of January. I don’t feel like doing anything. As in: absolutely nothing, but okay.
Chemo killed a tear duct and my left eye won’t stop crying. I’ve actually felt compelled to start explaining that I am not upset.
So the Cutting and Poisoning are over. Next up the Burning and Drugging.
Bike ride today for the first time in months. The poison and inertia have left their mark and I hope I have found the weakness basement. Inertia + poison = atrophy.
The nurse at the radiologist office tells me to, “only wear a bra on special occasions.” I think Tuesdays are special. In fact, I feel special often.
Connie sent flowers.
It is distressing when you doctors tells you, “Your skin is disintegrating.”
Chemo’s been over and I carry a mascara-ready-attitude. Now my eye lashes fall out? WTF.
Midway through radiation, when my skin was disappearing and the pain chronic, someone, a nurse I think, said “You are in grin-and-bear-it phase.” She was trying to explain that I was going to get worse before I got better and that there was not a lot they could do. But really, what part of this hasn’t been “Suck it up”?
Everyone said radiation would be easier that chemo. Everything is easier than chemo. Radiation is hard and chronic pain is fatiguing.
The once empty hairbrush drawer is now filled with lotions, creams, and gels all to sooth the areas once coved by skin.
I am so glad The Queen is not on my agenda. I’m not sure that would be special enough.
Radiation is five time a week for six weeks. That plus a few other appointments makes for 35 doctor’s visits in six weeks.
I miss skin.
Chemo Brain killed my memory. Recalling names, places, conversations, things I know I know are simply not there anymore. Given enough time, they mostly come back which often makes them untimely. The odd thing is that I can name the missing nouns, which only begged the question: what verbs have I lost? Conjunctions, articles, pronouns and interjections all seem to be intact and truth be told I’m not too concerned about adjectives and adverbs. But verbs? They are my favorite and I have no way to tally them to see who is missing.
Mid-September. Radiation and Hurdle Number Three is complete.
Eighty-five visits to medical facilities since January 10, 2012. And I wonder what I’ve been doing this year. Technically I was cancer-free after surgery. Chemo and radiation are preventive. Wryly, I say that I am so much better now that the doctors have stopped working on me. Really I am very grateful to have more birthdays ahead.
Healing will take months. Begin.