For all who are touched, tickled, or inspired by Diane. Share a thought or an idea...a bit of humor or an encouraging rambling...a photo, a story, a yummy recipe, some silly nonsense.
So the nurse faxes me back the Family Medical Leave authorization form I need for work. The doctor has filled out all the fields....date of diagnosis...side effects patient is coping with...there are also some specific yes/no questions:
Does the patient need ongoing care? Dr. Rushing has marked "yes" with an "X".
Is the patient experiencing ongoing symptoms? "X" for "yes".
Is the patient pregnant? A big fat "X" on the "yes" line.
No ovaries, but apparently still pregnant. You are a miracle, mom.
On Tuesday, we met with the doctor. No change on the Doxil. Still hasn't kicked in. Dr. Rushing says to give it another four weeks to see if her CA125 goes down.
Throughout the week, her creatine levels went up and down. Indicates how well her kidneys are filtering out toxins. She and dad go in tomorrow to see if it's time to see a urologist.
On Friday, she headed in for some fluids at the clinic. Blood pressure high...and then a headache so splitting they gave her morphine. It's taken her until this afternoon to get her legs beneath her again. She was pretty wobbly. And yesterday she was sick.
And yet, today, while Dad drops Jesse off at the train station, mom and I curl up beneath the quilt Sarah made, and we talk. I watch her eyes--her pupils are dilated from all of her medication--but she's breaking through the fuzziness to be there for me.
"Honey," she says. "Even though I'm loopy, I wouldn't want you not to tell me about how you're doing. There isn't drowsiness I wouldn't push through to talk."
I cry. And she holds my cheeks in her hands. She's still my momma--and so brave.
So lately (though it's better this week), it's been going something like this:
pain. take pain med. get nauseaus. take anti-nauseau pill. throw up anyway. get weak. take different anti-nausea pill. get loopy from anti-nauseua pill. get backed up. get dehydrated. more pain. more pain med. pain med bad on kidneys. stop that pain med. take more of first pain med...
You get the picture. I would call it perhaps the most difficult and painful of juggling acts, and it's been beating mom up lately. Talked to the nurse on Friday and she mentioned how much everyone loves mom at the clinic...and how they're all amazed at how little pain medication she's taken...Think mom finally realized that the pain has reached a point where it's more preoccupying and disorienting than the loopiness the meds cause.
One of the most difficult parts of this whole deal is how consuming the disease is. It seems bad enough to be going through it; at least you want to be able to enjoy some of the things that make you feel normal. But so much of mom's time is in management now. On Friday, she spent from 1:00 until 9:00 in the hospital getting a CAT-scan and her weekly lung drain.
BUT all is not despair. Like I said at the beginning of this post, she was well enough for me to mosy on over with Alex on Saturday night to parade off my dress and haircut for an awards ceremony that night. She and dad were cuddled on the couch watching a movie together. Love seeing that--and dad's gentle kisses to her forehead.
We're off to see the doctor tomorrow. COME ON DOXIL!
The good news: I woke up one day last week to discover the sudden reappearance of my eyebrows! A peek under my night cap showed a downy covering of black fuzz there, too--imagine. Now if I can just ask one more small favor of the Great Provider: could my hair not return as the kind that sticks straight out--the electrified model--but instead, something cute and curly?
Joyful news: as you may know, the kids were all home this past week on a work/play retreat that stood in for a trip to Europe, or even one to New York. We saw a play--the farce "A Flea in her Ear." Went out for a great dinner with a guest appearance by brother Alex and sister-in-law Mary from Eastern Oregon. Had professional massages and a night of music provided by Nathan on fiddle, Jesse on my old guitar from student days in Mexico. We made cherry pie--the passing on of a family tradition and lots of tasty, colorful feasts which I enjoyed with my eyes, mostly.
Then came the work part. As my dad would say, there were too many chiefs and not enough Indians. Talk about take-charge kids. Boxes were dragged from the basement, contents hurled into piles according to each person's separate value system, while I frantically tried to save whatever treasures might be cowering among the junk. Now that everyone's gone home, we still have, uhumm, several minor mountain ranges traversing the plains of our major living areas.
Most importantly, though, we sorted through our thoughts and hopes on end-of-life issues--not in a morbid way--to be sure we were in agreement and can move on to enjoy the months or years ahead. We laughed, we cried, we appreciated each other as never before. Two months from now we'll know if the current drug has successfully stormed the fort and can maintain me for a decent stretch. In the meantime things are likely to continue rocky. That is, more time spent on the fighting rail of the track than on the scenic one.
As for Magda, the Divine, she impatiently awaits her writer's hand, having been left in the middle of announcing to her daughter Silvia that she was marrying the gringo, Sr. Karl, whom she has known six days:
"You're not going to be a Mexican anymore?" Silvia looked horrified.
"I suppose not," said Magda. "But in my heart, I will always be."
"You don't even speak English! How are you going to communicate with that man?" Magda wanted to explain how Sr. Karl had used sign language to encourage her to go parasailing and how she had felt when he put his speechless arm across her shoulders. She was just the right height to fit under it. She wanted to say that words were of less importance when you were matching spirits—you understood each other instinctively, while if you were mismatched, no quantity of words could bridge the gap.
Have loved hearing from you. May spring be sunny and greening wherever you are.
Despite a wonderful visit from her sister, Lorie, this past week has been a bit uncomfortable for mom. As she mentioned previously, she's on the pain killers now, which means it's quite a dance between various types of drugs...and it's a dance where it seems as though your partner is constantly stepping, no stomping, on your feet.
She began taking vicadin...which made her nauseous, so then she took anti-nausea which made her super drowsy...then she was sort of okay but the pain wasn't under control...so then she went on the fetanyl patch, which made her sleep away most of the weekend (sans a movie or two and stroll around the block with dad and me yesterday)...and then, joy of joys, made her nauseous and sick again later last night. BLAH!
As I write, she's getting poked by Laura, her acupuncturist. Am hoping that'll help keep everything down. I continue to be amazed at how well she takes most everything in stride, at least on the outside, even if she struggles privately. Aunt Lorie has helped us put the next couple of months in perspective, i.e. looking at them as a temporary state until the doxil kicks in and begins kicking the cancer cells' butts. (Sorry mom, had to use "butt".)
Fortunately, there are good things to look forward to--Nathan and Jesse head down and over on Friday for four days of family bonding and basement "stuff" sorting.
And before I forget...have been meaning to tell you all again how heart warming it is to know you're all out there. The cards, the blog comments...means a ton to us.
This week has shown me how lucky I've been till now to be relatively pain free. While we're waiting for the new drug to take effect, which could be up to three months, the cancer cells appear to be having a heyday in the vicinity of my right lung. The irritation refers pain to my shoulders and lower ribs and does a good job of distracting me from other things. My doctor gives no extra points for stoics and said today I better get used to the fact I'm going to be needing the heavier stuff, i.e., narcotics.
Monday night found me weeping in Jeff's arms in the dark, not because of the pain, but because of a presentiment that I may have a lot fewer days ahead of me than I had counted on. As Magda's daughter tells her when Magda cannot be dissuaded from marrying the gringo and following him north to Montana: Don't be dramatic, Mama. This is not a telenovela!
On that score, Magda's story is up to page forty (lost a little time trying to get that distracting pain under control), which completes part one. Here's Magda just prior to the marriage proposal she's helped orchestrate:
The three of them sat on benches at a long table covered with red and white oilcloth and speared rosy shrimp from huge cocktails. Sr. Karl shook his head appreciatively and said,"Buen-o, buen-o." "Lo mejor--the best!" agreed Roberto. Magda dabbed at her lips with a paper napkin, as pleased with their praise as if she, herself, were the shrimp.
Jeff is in Washington, D.C. at his annual transportation conference this week. Had to be nudged to go with promises I'll be all right. Sweet Pea Valarie insists I'm to call her if I have the slightest twinge in the night. She'll rush right over. Jesse's here this weekend and my darling sister Lorie comes on Monday from Missoula to keep me company and help organize my head for the things I really do need to tend to. She also does Zumba. Grab the hook--we'll be clattering across the stage together!
While we're waiting for the Doxil to kick in (could be a while), those knarly little tumors are kicking out some fluid into mom's lungs, which causes her a lot of pain. Mom hasn't been sleeping very well because of it, so yesterday they went in and drew some fluid out of her lungs. We're hoping that helps her breath deeper and feel better.
To balance the blech part of all this, we thought we'd share a sweet tidbit too: we've found a french bakery with super tasty caramel rolls. Mom loves caramel roles.
And, for the heck of it, a bit of dialogue I heard about last night:
Dad: Di, how about some broccoli with mayo? Mom: No. Dad: How about some broccoli with lemon juice? Mom: Blah. I want ice cream!
In early September, we thought mom (Diane to most of you) may have had gallstones. Turned out to be ovarian cancer instead.
Mom is a writer, a creative, and her gift and contribution to the world is communicating through words and art--sharing a message, an inspiration, love and lessons. This here blog is for her. Please join us.
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