Bits and Pieces as They Come to Me
The writing seems to help and I know that when you read this…It helps keep Emilee alive in our hearts…and she is smiling…that’s all I need for the moment.
Some stuff I left out when I wrote about Emilee’s journey… the ongoing battle with dehydration… numerous times at the emergency department for one symptom or another that was rooted in being dehydrated…needing fluids.
When in doubt about why one is having the symptoms they are having especially after chemo, suspect dehydration. Even if she wanted to she could not have drunk enough fluids, and most of the time she did not want to drink that much. Especially if nauseous.
And, she would not take the enzymes…she didn’t like any of the pills…the enzymes were supposed to help with digestion of food…since the pancreas was severely handicapped by tumor…..she tried the enzymes in the very beginning….but did not like them….tried them again later on…..i even got the ones from the health food store that were not from pigs…all the prescription ones are porcine based…poor piggies…but she would not take those either…said they bothered her bowels…the non-porcine based ones gave her a headache.
She hated taking pills… and even the potassium and magnesium…at least those she could get by IV when her numbers were very low… I have soooo many pills that she would not take.
She would speak to her daughter Courtney repeatedly every day…texts…phone… they were friends…close friends. Courtney keeps busy with children and work, but I know when she stops and it is quiet, she hurts.
The dronabinol…marijuana pills…I still have them in the fridge…yeah…lol….I did not try them yet…but I will…one of these nights…she didn’t like those either…only took them a couple of times to help her get to sleep when she was so nauseous, but she did not like the way they made her feel…and…like she told me with ALL the pills, she would say, “You take them, I am not taking them”.
Sleep…she was up half the night every night…would usually fall asleep around 9 or 10 and sleep for 2 or 3 hours and then be up from around 1 to 3 or 4 or so, then would sleep for a few hours, had to wake up to eat something so her blood sugar didn’t drop too low…. constant worry about sugar dropping…in the early stages it was worry about how high it was…and dealing with insulin…long acting and short acting…later on, it was worrying about how low it was going…and not going too long without eating something. Crackers, peanut butter, jelly, fluff, pistachios at times.
Dark days…some days I could not reach her, she was so depressed.
Some days she would bounce back with energy and start cleaning, straightening, dusting, and overdo it…and then be exhausted. Early on we started using the transport wheel chair when going anywhere. Stamina or endurance was limited. Sometimes, in the beginning, she would walk around the main floor in our house, one or two laps around and she would be fatigued. On and off she would need the rolling walker, mostly towards the end when her breathing was getting more difficult.
She was obsessive about the sheets on her bed being changed every few days…and then she wouldn’t always let me make the bed right away…. I had the clean sheets ready to go but sometimes it would be a day or two before she said okay, make the bed. And the sheet HAD to be tucked in with hospital corner style…It took me awhile to learn…lol…she would get exasperated with me…HOW MANY TIMES do I have to show you…ahhhhhhhhhhh. I finally got it. Well, I got it good enough.
Probably no one really wants to hear about the bowels… before the gastric bypass it was mostly constipation versus diarrhea…back and forth and back and forth…. Stool softener which she would not stay on regularly, senna or senna plus, sometimes lactulose …before the bypass…but that was harsh, and she stopped using that after the results were…okay, okay…censoring.
After the bypass, we bought stock in immodium…many, many of our outings were strategically planned around bathroom locations. Of course, they had to be decent bathrooms. I had the Zagat ratings for all the available bathrooms in a 10 mile surrounding radius…not just for Em, but I frequently have an overactive bladder…sometimes needing to stop more than she did.
So, Dunkin donuts was acceptable, Bishops Farm was a good one, Mom’s house was always available, when nearby…our favorite little market in Northford…. Bed Bath and Beyond, especially good because the bathroom is right near the entrance…verrry important…verrrry…did I say very???
One day…just one…we actually laughed about this. Laughed till I was crying, tears running down my face, not knowing if I should be laughing so hard because it was so heart wrenching and yet hysterically funny at the same time, kind of like now as I am writing this and tearing at the same time. At least on that day, she laughed with me…which by the way, could be dangerous…damn…I miss her voice, especially her laugh.
I can’t help myself. Emilee…forgive me hun. It is worth telling. At various times throughout the ordeal, and especially when going from sitting or lying to standing, there basically was no control over the gas. None. Some periods were worse than others, but it was pretty much a given, if she stood up, she had gas. Our granddaughter said one day, “Mimi, you sure do make a racket”. We had a good laugh.
That became a standing joke…ha…no pun intended. We had a T-shirt custom made. It said…on the front…”racket coming” with a cloud that said CHEMO. On the back, it said, “racket going”, with a CHEMO cloud. Funny, I think she only wore it once…I will have to find it and take ownership proudly.
Her sunglasses, she was soooo the movie star with her sunglasses. She had at least six pairs or more. Her favorite ones were the turquoise ones. Very cool, especially when her hair was short or gone completely. Almost always on top of her head if she did not have them covering her eyes. And, yes, we do need a picture.
More to come…stay tuned.
Life After Emilee, on the loss of my wife to pancreatic cancer. I’m not accepting comments right now but please feel free to get in touch via my Contact page.