Some information I pass on for free......
Number 1: If you are ever diagnosed with a major disease, don't do it on December 22nd, before the whole medical world shuts down for ten days. And then consequently, schedules out two to four weeks further.
Number 2: Don't get sick on a Friday night. Especially if you need to talk to a doctor.
When my chemo nurse was going through all of the possible side effects on my first "chemo-Friday" over a week ago, I was like "this can't be worse than chemo three days a week, can it?"
She kind of looked at me sideways, said something about "really liking the patients that got this chemo round second because they already know a lot of what to expect", and then proceeded with her explanations, saying I would feel the hit on days 4 and 5, and then to be cautious around germs especially days 7 - 14.
I felt pretty bad on Day 3, and thought if Day 4 is worse, this might not be such a cake walk. Then, Day 4 felt better than Day 3, and Day 5 felt better than Day 4, and I whispered words like "easy". Then, to folks inquiring to 'how was I feeling', typed words like "easy-breezy".
And maybe I even said one "eezy-peezy-breezy" outloud.
Thursday morning, Day 6, I woke up, stretched, felt better and thought "ok, one chemo treatment down, three to go"......
Friday morning I got up, took a walk, saw the twins awesome home school work that they are doing (I cannot believe the state standards now for kindergarten - they used the word "adjective", then explained what the word meant. I think the first time I heard that word was in fourth grade....)
But anyways, all to say, I was feeling pretty good. I got home, laid on the couch for some serious HG-TV "Candice Tells All" time catch-up, mostly with my eyes closed, and suddenly, by 8pm, I am shaking like a leaf. Like a "check your temperature" leaf.
One of the big rules of chemo is that your immunity is pretty severely compromised the longer you go. Some weeks the last chemo go-around, I was lucky to put two good white blood cells together in six months. Realizing that, they give you sound, stern warnings, numerous times to the effect "that if your temperature is 100.5, go immediately to an emergency room!!" Go to have a blood count done, and get possible IV antibiotics - because you don't have the immunity to play around and "wait and see".
They frankly tell you that an infection could swirl through you pretty quickly and you could be *dead* if you wait around too long.
So I check my temperature Friday night, and it is 100.2. If it was Friday afternoon, I could have called my doctor. If it was Thursday evening, I could have talked to my doctor. But unless you have been in the Friday night black hole of needing to find a doctor - your doctor - you may not realize the great space oddity of medical care - 5pm Friday afternoon until 8am Monday morning is not the time to get sick.
As they say on NatGeo TV, when you get that close to a black hole, there's no hope for you - just bend over and kiss it all good-bye.
We could have gone to our local ER, but I don't have any connection there to my family doctor, and I sit in a communal waiting room - germy and non-germ patients all together - strep and staph and MRSA and meningitis and me! all sitting cozily together - meaning if I was not sick when I went in, I would more than likely be when I walked out, due to a lower immunity.
We weren't sure if 100.2 warranted a drive to OSU/James Cancer ER facility. If it was my second or more chemo, I wouldn't have wavered. But this was my first chemo in this round, and I had also had the Neulasta Injection to prop up my wimpy bone-marrow-generating-good-cells- capabilities, so we waited an hour and took my temperature again.
99.4.
Alrighty. Go to bed, try to warm up, get rid of the shakes and take it again in an hour - 100.4.
The callback I had put into my oncologists office came in, and it was your most basic, general, all-chemo-in-the-whole-wide-world-after-hours-medical-response: "Do what you feel comfortable with. If it goes up to 100.5, definitely come in."
"You're not connected directly with my doctors at the Stephanie Spielman Center?"
"no, this is an answering service."
"What if it's 100.4?"
"That's up to you."
I think there was a forced smile in her voice.
ARGH!!!!
I started packing a bag, took my temp like 18 more times, then like after 15 times of "let's go", then "no, it just dropped down again" and back and forth and back and forth, then at 4am we just gave up and went to bed.
I don't say the words "if I die before I wake" quite so simply any longer......
After another painful 'generalized-chemo-response-nurse-call' on Saturday, where I begged her to just send a simple message to my doctor or even one of my 20 chemo nurses there - only to be declined - we kept pushing a cut-off time later and later due to the above or below 100 cut off set in our minds now, then I finally did the unthinkable.
I dug through my meds and found an unfinished antibiotic from this past May, and I started it Saturday evening, went to bed not feeling so well again, and earnestly prayed for the best.
(And in case you wonder, yeah, I am probably watching way too much NatGeo TV now. I'm also fond of the "Big Bears" saga, and the "Big Cats" anytime they are on.)
Sunday morning, 98.4.
Monday morning, a prompt callback from my dear oncologists office.
The last time this happened, she had given me her business card, again, and circled her cell phone number and said "call me". I had carefully taped all of the many and diverse business cards I have collected this past year in a date planner book to have for quick reference, especially in case of emergency. I cleaned out my "go-bag" before surgery, and I have absolutely no idea where the most logical place in the world would be for me to have safely stashed it.
For those folks like me who errantly lose their most precious phone numbers, you go to the ER or wait until Monday morning.
I should add a "Number 3" to the above list just from this side of hindsight: Don't do chemo on Fridays. That makes your Day 7, Day 14, or more notoriously known as the "times you most likely need to talk to someone in the doctor's office days" out of time-step with regular office hours.
***
I am tired of the loss of time to disease and treatment. The week after the first chemo is kind of a blur because of the companion drugs they give you to jump over that hump of poison they pour into you. The step-down anti-nausea drug Phenergan and such aren't that much better at keeping time. I feel like I lose whole days, whole clumps of days, a whole week because I may be upright and seeming halfway fine, but my brain is taking a beating.
Again.
And yes, I am whining.
As much as they help to strip your memory, the drugs do little to help with sleep. Insomnia has been a constant companion for over a decade. So as I lay awake this morning at 2am, I check my phone, check my messages because I am too groggy to do it in the evening, and then lay there and think.
I woke up Sunday morning dreaming about my grandmother's sugar cookies. She would whip up a batch of baking every other day - breads, cinnamon rolls, butterscotch cookies, chocolate chip cookies, and her claim to fame - "Millie's old fashioned sugar cookie".
She had a steel step-back hutch in her kitchen that had a pull out shelf, and you could walk into her house many days and find pies or breads or warm cookies piled up cooling on the enamel. Her sugar cookies never had frosting, they were a spongier, cake type almost cookie, but it was a recipe from her mother - meaning it was truly an old fashioned sugar cookie. She was born in 1890.
But I woke up smelling her secret ingredient of nutmeg in those cookies. I had been dreaming about how I used to eat them - they were bigger cookies, so I folded them in half to dip them in milk. Or tea. My grandmother made a pot of tea each morning and drank from it all day long.
In my dream, I had been sitting in my Grandmother's warm kitchen again, before everyone else got up, sipping tea with her and dipping sugar cookies before breakfast.
This morning, no dream to think on and remember. Just wide awake, irritated that I am in treatment again. Irritated that I don't feel the best again. Irritated that I can feel the weakness sweeping over me again, breaking down my blood cells faster than a Neulasta Injection can replenish.
While looking at a dark ceiling, I did remember that it was the official day for the Feast of Trumpets. The day God set aside to remember the creation of humans. The day set aside for the first day in God's calendar of months and years, or New Year's, if you will.
Along with it being the anniversary of the creation of Adam and Eve, it seems to carry a little bit more significance than I had originally thought. It's also considered a time to reflect on the first man and woman and their first reaction toward the realization of mankind's role in God's world.
Humph.
And yet there is more. Because of that the Jews believe that Rosh Hashanah, or the Biblical Feast of Trumpets, "emphasizes the special relationship between God and humanity -- our dependence on God as our creator and sustainer, and God's dependence upon us as the ones who make His presence known and felt in His world."
The last part just kind of blows me away. "God's *dependence* on us"???? wowsers.
So this morning as I lay there wide awake at 2am, I'm reading this, and thinking and thankful and getting out of the rut of feeling sorry for myself and thinking it is as the first Rabbi I ever listened to said, "Now, GO, REFLECT GOD!"
I take that back - the first Rabbi I listened to said "love one another as yourself".
My brain yells out "heed those words", all of them, because if the Jews are right, God's kind of depending on us to do that. Yikes.
***
Also, on NatGeo, I watched an interview of George Bush recounting 9/11. Regardless of how you feel about George Bush, seeing the views and the pictures and the horror, and then realizing what that horror that day brought about for hundreds of thousands of families like ours that were eventually touched by it, made me weep.
It's been over a decade and we are still fighting that war. I know there are lots of views on it, lots of opinions, lots of spouting, but, today of all days, I wonder if there has been a lot of praying over it all.
While our son was deployed, I wasn't sure that most of Americans realized that we were in a war in two different nations - fighting the same terrorists. Most didn't seem to know what some were giving up. By the time if filtered down to most of America, it was mostly rhetoric.
So we argued and bickered and talked philosophy, but there was not a lot of noticeable, concerted prayer. At least from the view at my bleacher seat.
I pray today, that if this day of the new year God does truly evaluate humans and their deeds and we are today to truly pray for this next year coming that God would bless us, I would pray that we first of all tend to our souls, but remember the soldiers and then pray for unity and pray for peace.
Honestly, every time my injured nerve endings have screamed at me, I have thought of all those soldiers dealing with much more severe body trauma, and dealing with much more severe grief and heartache.
No one thought Germany and Japan would become friends and allies again after 1940. But they did. There were a lot of people praying then. I know that because I am married to a brilliant historian, and also, I have, ahem, been watching the Waltons as well, circa 1944.
Perhaps praying and realizing that God is depending on us as the ones who make His presence known and felt in this world is really key to turning the hearts of humankind. Maybe we should quit barking and start praying.
On the Feast of Trumpets, today, the trumpet blasts over 100 times to remind us to turn to God for the coming year, to pray for the coming year.
I am taking it much more seriously this year.
Maybe my "anonymous-gift-sender" said it best this week, "when you light a lamp for somebody, it will also brighten your own path."
Their remembrances of our plight and kindnesses have moved us greatly. The words more-so. This one already got the message.
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