Just Thinking...

I was driving down 512 the other day feeling so-so and got hit with a tsunami. I can't think of a better way to describe the dirge of emotions sweeping over me. Prior to the wave, I thought I was feeling pretty good, well, fair to middlin' as dad used to say. Then total trauma, Kenny, mom, the last few months with dad, all the unknown sweep of stuff waiting in the future...I was pummelled, literally and figuratively tossed about for a moment that felt like forever. The experts woud call what I had an anxiety attack. Perhaps, if we have to put a name to it. I almost pulled over to let it pass. But I didn't. I kept driving, taking it for granted God would take the wheel and get me where I needed to be.

I wonder when this will all pass. This thing we go through, this place we're in. I hate being at the in between spot. Kind of like a bomb went off, scattering pieces of life every which way, and we're left, desperately trying to put everything back together again; stumbling along. Some people seem to do it so much better than others. I wonder why that is? Are they just better at pretending? I wish I knew. Jimmy is like me, he doesn't know how to pretend anymore, any better than I do. So he stays away, hidden behind the painkillers, while I take refuge at night behind the mist of sleep.

Whatever.

A Better Tuesday

It's funny, but I only seem to write when I'm feeling like crap. Like when I was a teen and used to write poetry so dark and depressing it would've made a true blue optimist like Mother Theresa weep in despair. That said, I'm writing at this very moment and happy to report that I'm actually feeling kinda sorta good, with exception of a gnawing ache in my back. I was at my house today trying to prepare for a house guest. So, in between actually trying to get some work done, while listening to the manly grunts and groans of 3 burly men tearing up the carpeting in my bedroom--because of the fly problem--and replacing it with one not contaminated with deceased fly bodies, and trying to tidy up a home that looked like the aftermath of a cyclone disaster, I'm kind of pooped. But I just wanted to drop a note or two about Dad. He seems to be getting along quite well. He's back to eating so his weight has stabilized, he seems to be enduring the Tuesday chemo treatments-- body scan showed chemo is doing its job, and he's back to getting on everybody's nerves. My heart is much lighter than it was.

My focus is on today, not worrying about what tomorrow might bring. I'm reminding myself daily to be more positive and to thank God for this moment where everything appears to be on the mend. Thank you! Thank you! Thank you!

Rantings and Ravings of an Emotionally Shipwrecked Daughter

I just re-read a couple of my earlier posts, and I sound like a raving bitch. I'm ashamed of myself and at the same time painfully aware. Life is breaking my heart, and what I've written is actually the ravings of a really scared little girl who's afraid of losing her dad. The chemo is kicking his butt and he's shrinking, going from about 220 b4 surgery to 186 as of Wednesday. Although he makes a valid attempt at eating -- he stuffs the fridge with all of the non diabetic foods he's historically enjoyed -- he's just not consuming the calories. Last night I tried to tempt him with some pork chops dipped in egg, dropped in flour and instead of baked, fried in oil and then smothered in gravy with some candied sweet potatoes on the side. Yeah, I know, not very heart healthy but at this point we just want him to eat something. He told me to put everything in the fridge and he'd eat it tomorrow. I already know the gestation period in the fridge will be approximately one week before I toss it in the garbage. Been there, done that.

Ernie left on Wednesday and I wonder if that has anything to do with him being so down. His little bro's visit was really good for him, and yes, I have to admit Ernie made a liar out of me by staying for the duration. He cooked for him, did some house cleaning, fed the dog, did dad's laundry, drove him to his chemo appointments on Tuesday, and on Valentine's Day, made us all the best damn pot roast I'd ever tasted. He was awesome. The pot roast was followed by a chocolate cake dad ordered from Safeway, as a thank you to his girls for taking care of him. It was a really sweet thing to do.

Ernie and I talked alot on the drive to the airport and he gave me a lot of insight into dad as a person. I talked to him about our fears and frustrations. Crazy frustration when Dad continued to lay around after his surgery when we thought he should be making more effort to keep moving, and we thought he should have made more effort to cleaning up after himself, and we thought he should have been more involved with his ostomy care and eating healthier. Bottom line, we were completely out of our depth, in an emotional upheaval trying to adjust in uncharted territory. And Dad?...well, Dad's body has been in active combat, in a war zone on the front lines, sustaining numerous casualties. All he's been trying to do the past couple of months is survive, which has literally taken everything he's got. Life after surgery has been a royal bitch, and his primary focus has been, and continues to be the extreme effort that is necessary to keep moving one foot in front of the other. Literally and figuratively.

Uncle Ernie's advice? Help him continue to live in his own home with dignity. Hold him up when the burden of his illness becomes too heavy for him to bare alone, pick up after him if he leaves something behind, listen to him when he needs to spout off. Because tomorrow...well, it's a gray area.

And so we'll take Uncle Ernie's good advice, and just be there for Dad no matter what. And pray, lots of prayers.

Dear God, I am really weak, please don't let me crumble under pressure. Help us all to be what dad needs us to be to help him get through this.

Love You Forever - Part II

We live in a society where people who are on the fast track are applauded and praised for keeping up and surpassing everybody else; people who are independent and progressive thinkers, active contributors to society. This is a good thing. The bad thing about it is there no longer appears to be a place in society for those who can no longer keep pace, like the elderly or the sick. Their past contributions are tossed aside like something used up and no longer of value.

Over the past few years and more recently in the last couple of months since Dad's surgery, I've heard the word "burden" tossed around more times than I cared to hear. Of course, nobody specifically connects the use of the word in relation to mom, Kenny and now dad, but it's there unspoken. It's usually stated as a side bar, with an explanation on how they've managed their own lives so as not to be a burden on their family. And again, this is not a bad thing. Matter of fact, it's a very responsible way to go about taking care of those loose ends. However, everybody is not as well equipped to handle the reality that bad things happen to good people. So, what do we do when they do happen-- the bad stuff I mean? When debilitating illness strikes, like cancer, stroke or heart attack--and we're not as prepared as we'd intended to be. I've seen the answer to my question in the nursing homes where I volunteer for hospice. Somewhere along the road, placing your loved ones away in a home to be cared for by strangers has become the norm, the acceptable, the punishment for no longer being able to keep pace. When did this become okay?

When Kenny was sick, Joan was there every step of the way, making those trips between California to Arizona and back again. It must have been exhausting, but I don't remember hearing her use the word "burden" to describe the situation or the disruption to her life. I saw the tears in her eyes for the impending goodbye she'd have to make, but I never saw resentment. I saw the determination in her will to make sure our brother died with dignity, and in peace and knowing, that not only was she there for him in his time of need, but that she would continue to be there for his children in the years to come. And she's done all of that and more. It was during this terrible time of loss, that I learned truly for the first time, the depth of my big sister's character, her level of compassion, her devotion to her younger sibling, and capacity to love, unconditionally. I think we are closer now than ever before. Kenny never doubted Joan's love and loyalty, and knew she'd be there for him, no matter what. I know because he'd commented on it, on more than one occasion.

There are so many different ways of making people feel like shit without saying a single word. Like going through the motions of helping, of listening, of being there all the while carrying inside a lot of resentment and anger that this person's moment is keeping you from something you need or want to be doing. Honestly, I'd rather be put in a state-run facility than look into the eyes of a family member and see myself as their burden, instead of the love that I'd hoped would be there at such a time.

"I'll Love You Forever, I'll Love You For Always". Unconditionally, no matter what. I'll be there for you. The sincerity of a promise that encompasses every single moment, good and bad without censure. How many of us can love like that?

Love You Forever

When Michael was nine I bought him a book called, "Love You Forever" by Robert Munsch. The reason why the book comes to mind of late is because a co-worker mentioned it. We were talking about kid's story books and how really violent and/or deranged some classic children stories and lullabys were, for instance Rock A By Baby. Poor little baby sits in a tree top, in a cradle and falls. May be an example of either teen parenting where they're too stupid to know any better, or child abuse straight up. We actually sang this lullaby to our children to put them to sleep at night. Like watching Nightmare On Elmstreet I-IV and then expecting to get a good nights sleep. My co-worker then asked me if I'd ever read the book called, "Love You forever". So I told her, "Yes of course. I bought it for my son when he was nine. I loved that story. It's about unconditional love." She looked back at me like she had a secret or something. "Um," she says. "Didn't you find it to be just a little bit creepy the way the mom keeps stocking her son?" Huh.

Here's an excerpt of the back cover, "A young woman holds her newborn son and looks at him lovingly. Softly she sings to him:

I'll love you forever,
I'll like you for always,
As long as I'm living
my baby you'll be.

She does this throughout his terrible twos when at times you're more inclined to drop the kid off in the dark of night on the steps of an orphanage then lull him to sleep with a lullaby, through the teen years when typical focus must be given to not slapping him or her silly, and adulthood when sanity starts to level out to the point a parent can actually communicate with their adult child. Through the good, the bad and the ugly moms sings the same lullaby.

Okay perhaps the uncomfortable moment comes in when the kid is grown and living on his own and mom is sitting outside her grown son's house like a cat burglar. She patiently waits for the lights to go out, then sneaks into his bedroom window, crawls across the floor, peaks over the side of the bed (a tad creepy!) and,

"If that great big man was really asleep she picked him up and rocked him back and forth, back and forth, back and forth." Dang. Again, with the lullaby.

But seriously, when I first read this book I cried. The author's intent was pure, not sadistic or perverted, and I got that right off and wanted to share it with my child, which is my point for bringing this up in the first place. Love is unconditional, it just is. In my opinion, if we can't bring it like that, we're better off not loving at all. Well, I've gotta go. I want to get over to dad's house and clean up his bedroom while he's having his chemo today. I had another point to make, but can't quite recall what it was so I'll get back to it later.

Great Grand Dad

Michael, Tamara, Verdell and Megan call him Daddy, Debbie and Tony call him Pops; he's great granddad to Desiree, although she used to call him Daddy until her father got bent and asked her not to. He was Ken to mom and sometimes other names I'm sure when he made her mad, asshole comes to mind mumbled under her breath on occasion. He's many things to many people. Jean, Joan, Vickie, Gary, Me, Kenny, Jimmy and Lisa called him Dadi when we were kids - draw out the "a" real country-like and make it lo00ng. Or maybe it was just the 4 youngest and Vickie that called him that. I think we got it from watching Shirley Temple on Sundays. I'm not sure. Now, I just call him Dad. He was practically super man when I was in high school. Could leap tall buildings and all that. Knew everything about anything, one of the smartest people I knew. I'd tell everybody at school all proud, "My dad works at Fred Meyer, manager of home improvement department. If you need anything at all go to him. He's the only one there who really understands customer service." I think I heard dad say that a time or two. And off they'd go, then report back to me to say I was right. Duh. My dad, they'd say, was a resource of valuable information about anything related to building stuff. Kind of funny when you think about it because although dad could direct a hapless customer down a certain isle for a certain something for a building project, or give you advice on a specific product the store carried, he wasn't much for putting stuff together himself, well...not without a project disability of some sort anyway. I remember certain aspects of the house I grew up in on 51st Avenue East. Let's see, if you turned on the heater in the bathroom it would turn on the heat in my room. The hot water turned on the cold and cold...well hot of course. The house had some serious electrical disorders. It later, many years later, burned to the ground. I seem to recall a rumor about an electrical fire that started in the walls. Not a big surprise. Dad, mom and Allstate had the house rebuilt. Although mom tried really hard to keep him from fixing anything that involved electrical wires and tools, some things were just meant to be. In the newer home, if you talk too loud you can set the door bell off. And we're all rather loud so...well, you know.

My dad epitomizes the skill and art of customer service because he's a people person. This is why he was such a good manager. His world is everything it needs to be when he's socializing with people. You know? Now that mom's gone he spends way too much time by himself and the natural urge to socialize gets all jammed up inside. Not good for a social butterfly. So when he gets a call or his children stop by, this really genuine talker dad of mine just talks...talks about the war, or the old days, or Jennifer Anniston and his opinion on why Brad left her for Angelina Joli, or free range chicken...just mentioning free range will start him down the road to the conversation he had with Jean and how she thinks the chicken at Safeway is free range which is ridiculous, and how when he was a kid that's all they had and how really good it was. Yep, Dad's a talker, as am I and the rest of the family, except Lisa that is. She's a quiet one, the only quiet one in the family.

I tried to come up with the one word, a nice one, to describe my dad and it made me think of a conversation I had one day with my granddaughter. I was sharing custody of her for a weekend with the other grandparents and was driving her back across town after a short visit with dad. She was sitting in the back in her car seat just chatting away about him. She was referring to him as him. Him said this and him said that. Our conversation went something like this, "Diamond, honey, you can call him great granddad." With a puzzled look, she looked back at me with all her cuteness, "Why?" she asked. "Well," I tried to explain patiently being the good Noni that I am, "because he's your dad's granddad, and your great granddad." Again the furrowing of her baby brows. "Why?" she asked. After going around and around and trying to explain the hierarchy of first being a dad, a granddad and then becoming a great granddad, there was silence in the back seat of the car as her little mind struggled to process the information, then she said, "I mean why's he great?" Why's he great? Oh. She was only three at the time. My Diamond is the smartest granddaughter ever. I tell her that all the time. I had to chuckle. Why's he great? "Well, because he's my dad," I told her laughing.

And over the past few weeks, with the frustrations and the moments of feeling completely undone by sadness and a fear that sometimes crushes my heart inside my chest, I think about all that. He's the only Dad I have. And that's mighty great.

Yesterday was a really bad day for my proud and really stubborn father. Today was good I think. No mishaps with the colostomy bag. My uncle made him a really good dinner. He ate it. That's good.

God, please just help him get better. I don't want him to suffer, and I don't want him to ever stop talking. Amen.

Longest Night

I must be the worst caregiver there is. It sucks for Dad that I'm what he gets as a primary caregiver. I don't know what I'm doing, I'm angry most of the time, impatient, frustrated, irritable and so unbelievably frustrated. Last night never ended. It started the minute I walked in the door after work. Dad greets me in his undergarment, holding his hand against his stoma. I hate it when he walks around like that. The wafer and bag had just fallen off (AGAIN!). Debbie replaced it just Sunday. The air was scented with feces, and my somewhat pleasant mood tanked. It seemed to my weary eyes that everything he touched had feces smeared on it, the back door, the washing machine, bathroom sink, waste basket filled with soiled paper towels...it was horrible. I tried to hide my feelings but I'm not good at that. My face screwed up like an old prune as I walked into the living room for recon duty. I cut the appropriate sized hole in the middle of the wafer, glued it to his stomach, and attached a new bag. Having to replace the wafer was not what had me undone...but seeing my dad in his depends, not to mention, all the hot spots around the house where he marked his territory, completely messes with my head. I guess he figures anyone who has emptied his bag and checked stitches in places where the sun don't shine...well, what else is there to be shy about? He also answers the door in his under garment for the nurse when she visits once a week. Delightful. Simple fact is, he's my dad and now that he's up and about is it too much to ask that he clean up behind himself when he exits the bathroom, and for Pete's sake conceal all those unmentionables behind the robe! That's what the belt is for. Is it too much to ask? After I cleaned him up and the environment around him I went upstairs. Sleep didn't come easy...I couldn't stop thinking about everything, my Dad, my job, my dad, losing my job, the lousy job I was doing helping my dad...with all that on my mind I must have dosed. What woke me up at around midnight was my dad bellowing. The wafer and bag had fallen off again. SHIT! Again, I cleaned him up, and everything else (don't ask!), went to the store to buy some stool softener and cookies, yeah, he asked for the marshmellow ones coated in chocolate, then tried to go back to sleep. I woke up at 6:00 a.m. So much for getting to work at 6:00 a.m. The bellowing again. I go into the living room and he's sitting in his underwear holding his hand against his stomach. Guess what happened? Yep, the whole thing fell off while he slept. The entire house smells like stool. Even after cleaning it up I can still smell it in my nose hairs.

Funny, Debbie and I were so proud of our efforts to get him back on his feet the weeks following his surgery. We diligently followed the instructions from the nurses, emptied the colostopy bags, kept the incision clean, helped him get around the house when he could barely walk...and seeing him improve lifted our spirits. We'd been able to keep him in his home like he wanted. Very naive.

I must sound like a really uncaring and unsympathetic daughter. I'm not, really I'm not...which is the point. I love my Dad. His problem with cleanliness existed before the surgery. Adding the issues with the colostopy bag just took it up a step.

Dad was going to cancel his chemo today, however after talking to his nurse, Brenda, she explained what was going on. Something about his stoma being inverted, which is why it keeps backing up, why it's not working properly, and why it's now bleeding. But the good part is they know how to fix it. She suggested that he keep his chemo appointment, then tonight at 5:30 p.m. he has another appointment to keep with Dr. Klatt, the guy who stole his rectum in the first place and replaced it with that damn stoma. The way I see it, Klatt owes dad big time. The thing ain't working, it's broke and needs to be fixed free of charge.

I'm sick to death of playing amateur nurse because I don't know what the hell I'm doing. This is the beginning of a scary story about cancer and diabetes and heart disease that will end badly. I know that. And I'm just scared.

Flies

Well, I'm at the end of my weekend and back at Dad's. Oh so sweet a minute of time it was in my own dwelling, flies and all. About the flies...I spent all last night killing these big fat flies, flies so fat and so slow all I had to do was snap a towel and they dropped. But as soon as I got one, another showed up to take it's place. We did that dance until around 11:00 pm. I would swat, kill and toss in the toilet, then return to the kitchen where they seem to congregate and again, swat, kill and toss, swat, kill and toss. I couldn't figure out for the life of me where they were coming from. My sister, aka landlord asked her ex husband whom she divorced a couple of months ago, and she said that he said the flies had been hibernating in my house as babies and were just now coming of age. How the heck does he know that's how they got into the house? I don't leave my windows or doors open and it's hard for me to fathom over 20 flies and counting flew into the house to lodge somewhere until reaching adulthood. He suggested that I get one of those foggers to set off. Did that before I left today. Okay, he tells my sister to remind me to turn the heat off because some lady in the east coast left the heat on, the house blew up and they charged her with arson. Okay...turning the heat off I did not do. Great, the house is going to blow up, I'll lose all my sentimental valuables and either end up in jail or back at dad's house. After what sounded like the beginning of whimpering on my end, my sister/landlord agreed to check on the house to make sure it didn't blow up. Damn flies.

The Chair

My dad had chemo today. Lasted about 4 1/2 hours or so. He had to sit in "the chair" while they administered the treatment by I.V. "The chair" is a recliner my dad has talked about for years after one of his visits to the oncologist for his prostate. "Some people sit in that chair all day," he'd say. Now it's his turn. Apparently this particular "chair" is one of the most comfortable recliners in the world. Although tonight when I asked him if the chair was as comfortable as he'd been told it was by other patients, he said, "Nope, mine wasn't comfortable. Made my back hurt." I could have gone upstairs and lost myself inside the pages of the really good vampire huntress novel I was reading, last one in the series, but instead I asked the question. "Why wasn't it comfortable Dad?" He paused in that dramatic way he does right before taking the really long way to tell what should have been a very short story. "All the good chairs were taken." My mind slipped back to the book waiting for me upstairs. Tempting. "So Dad, of all of the really comfortable chairs for chemo patients they had in the place there's only one left, you get it and it's a bad one?" He squirmed, trying to find comfort in his own recliner, purchased right before the surgery. He still had trouble sitting without a bit of discomfort 'caused by his incision. "That's right...but you know that's the thing about Doctor Jen's patients..." And so it goes. The point is, he got through his first chemo session and was still in a fairly good mood to talk about it. On a scale of 1-10, a 5 works. Yes, we'll take it.

Monday, Monday

Dad's in the living room talking to the therapist (and talking and talking). I'm in the dining room trying to lose myself on this website. She's trying to convince him to wear his ADT alert necklace around his neck, and he's trying to convince her it's just fine hanging on a picture above his bed. "I can't handle wearing something around my neck, " says my stubborn Dad. "So," she says sounding befuddled. My dad's really good at befuddling people. "You'd rather risk your life than have the alert necklace around your neck, within reach? Hmmm." Good luck trying to understand his thinking lady, I've been trying to figure him out for the last 51 years. Now she's having him take a short walk from the living room, through the kitchen, down the entryway and back to the living room, and he's talking non stop all the way. She tells him she'd like him to walk for about 4 minutes. They're on the third go round when he asks, "What if I fall?" He explains that he already had his exercise for the day 'cause he went up and down the stairs when he showered that morning, and was a bit tired from the excursion. She tells him if he falls she's going to leave him on the floor to see how long it takes him to get to the life alert necklace hanging on the picture frame over his bed. Funny. I like her.

Did I mention he was listening to Andre Reiu last night? One more step toward getting back to his norm. Okay now he's going on about the difference in the food served at St. Joseph Hospital and Madigan General Hospital, how hospitals try to cut cost, sad shape of the country in general and how you used to be able to trust people. "Uh huh," she says, now taking his blood pressure. He's talking about my mom's old walker and how he tried to give it back to the hospital later and they wouldn't take it. Another "Uh huh." Um...the one-sided conversation has just taken a sharp left toward China...and birth control. Doesn't surprise me but I think the therapist is a bit rattled. So now there's a bit of shuffling around as she wraps up the visit, front door opens and a mumbled goodbye as she makes a bee-line to her car sitting in the driveway. As I'm typing these words onto the page I hear the squeal of tires on gravel. Bye-bye.

Home Alone

It's Saturday. Last night was spent in my own abode sitting on the couch watching DVDs from Red box. Very cool, very peaceful. Here's my itinerary, at 1:30p.m. I'm off to do my volunteer work for hospice, where I get the opportunity to drive a patient's wife from one facility to another, so she can visit with her husband for about 3 hours. I usually pick her up again at 4:30 p.m. to take her back home. In between I'll spend a pleasant hour or so chatting with another hospice patient, a really gracious, classy 80-year-old woman so full of life and verve she always leaves me amazed. It's going to be a good day. Having some alone time has done wonders for my mood. At 5:30 tonight I'll return back to my place and sit in front of the TV again to just...chill. I'm loving it.

Yesterday, Megan, my niece, spent time with Dad, chauffeuring him around on some errands and fixing his dinner. Today and tomorrow my sister Jean will stop by for a short visit to check on Dad, and feed the dog. Cool. She was very willing to spend the entire weekend with him, however he wouldn't let her bring her dog. Vicky will drop by as well to tidy up the space where Dad has parked his bed. It's a pigsty. Nice to see what prevails when Debbie and I step aside. He'll be just fine.

Geez, I'm already looking forward to next Friday. Ciao.

P.S. Debbie called to "warn" me she's stopping by and will be staying the night. So much for alone time. It's alright though 'cause everything's back to normal for this weekend, and that's okay with me.

Pissed

I must be the worst caregiver ever. I just spent about a hour on the phone with my uncle complaining about my dad, my frustrations over his nasty attitude, and without a doubt conveyed my total discombobulated state of crazy. I'm sure he thinks I'm the worst kind of daughter, and will no doubt tell the rest of his siblings their eldest brother needs to be rescued from his uncaring offspring. My uncle will be here on January 27th - THANK GOD! He said he'll stay either 2-3 weeks. Notice how he gives himself the out of being able to leave earlier. He knows his brother well. For the record, I love my dad--would do just about anything to help him recover, but he can be very, very difficult. This isn't an anomoly, he was difficult before his surgery.

Before the surgery we tried to assure him that he could count on us to help him recover. His response, "Oh well, everybody says they'll help but..." I truly do not know why he has such a lack of faith in us. Okay, so I grit my teeth and allow his comments to flow over me like the sea. Positive energy in, negative energy out...breathe.

So yesterday my dad and I take a trip to the store and then stop at the gas station. Out of the blue, he says he's decided he's going to start driving again next week. I remind him that the doctor said he didn't want him behind the wheel of a car for at least a month. "Well," he says. "You don't know what he said you weren't there." Did I tell you my dad was a master manipulator? I work full time, but between me and the rest of my family, we make sure his needs are met, and up until today, we never left him alone. He continues, "The doctor just wants to make sure I can get to my chemo treatments every Wednesday." We'd taken him to every appointment since he got out of the hospital but for some reason he'd come to the conclusion we weren't taking him to his chemo appointments? Positive energy in, negative energy out. I take a deep breath before responding. "Dad, we will make sure you get to your chemo treatments." Silence. "Well," he says. "Everybody says they'll help but then..." I lost it. Because this was almost three weeks after checking him out of the hospital, and after changing countless colostomy bags, and after only half sleeping because of trying to keep ears open to any sound that he's in distress, and after changing his bandages, keeping his wounds dry and clean, and cooking his meals and cleaning up clothing dropped in the middle of the floor in the kitchen, outside of the laundry room, on the floor in the living room aka makeshift bedroom. And after all that, nothing seems to change his opinion of his worthless, fucking daughter. I'm so tired.

I'm looking forward to spending some alone time at my own home tomorrow. But I'll be back Sunday night...or Monday. Maybe.

Trials & Tribs

I haven't written on this blog in quite some time. I think I lost faith in the healing powers of putting everything out there. I don't feel healed. Not to mention that it's not very nice of me to put all my negativity into the universe via this blog, but here it goes. I'm hopeful that anybody I told about this blog is no longer tuning in so now seems a good time as any to spout off. My dad was diagnosed with rectal cancer in November. It's weird how quickly things take off after an initial diagnoses.

The surgery was set for December 4Th, same day mom died. The days after surgery will be ingrained in my mind and my heart forever. They removed his rectum and rerouted everything through his stomach. Although they had him doped up with morphine and pain meds I can't even pronounce, he suffered. His memory is sketchy on the days following the surgery, but I remember. In the days since, he's learning to live his life with a new appendage, the colostomy bag that must be emptied twice a day, every day for the duration of his life. Up until yesterday, this duty was performed by my niece and I who were "trained" by the ostomy nurses at St. Joseph Hospital. Because of the red tape that is synonymous with insurance we were initially told he would only be allowed up to 20 bags a month which means he would have to empty and reuse bags to conserve. The pre-registration nurse at St. Joseph told us there was an option for getting disposable bags, however "they", I'm not sure who "they" are but I can guarantee you they're probably not dealing with the mess of having to reuse bags, disapproved of human waste being deposited in the garbage can, ergo the first option to reuse bags. Of course, we know it has to do with insurance costs. It always does. The nurse said we had to prove my dad was a candidate for the disposable bags. So let me tell you the process for emptying a bag. Supposedly for a man, he should be able to sit on the toilet and allow the bag to hang between his legs. Remove the clip from the end of the bag and allow the waste to empty into the toilet. This is how things are supposed to work. Not so in real time. One, the stoma -- the medical term for the new organ on my dad's stomach where waste is secreted, sits high on his really full tummy so when it hangs down it literally sits on his lower abdomen. Before emptying the bag, he has to remove the clip, then fold the end of the bag up so waste does not soil the end -- if waste taints the end of the bag, there is odor because that's the part exposed after applying the clip. Well regardless to whether the bag is folded up or not fecal matter always finds its way to the end of the bag. To circumvent this we were told to use wet wipes to clean off the end of the bag, which is not a pleasant task. After emptying the bag, he has to unfold the end and gently wrap it around the clip. My dad is 78 years old this January, a diabetic, which means that cleanliness is critical, and at times his right hand shakes so badly he can barely hold on to the needle to give himself a shot of insulin, let alone maneuver the colostomy bag attached to his stomach. There is no way he will be able to easily adapt this routine into his daily life, not without there being some messy moments, which would be very embarrassing and upsetting for my very proud father. And just for the record, the waste in the bag never smoothly flows from the bag to the toilet especially as it becomes more solid. After a bit of discussion with the home care nurse, it was agreed disposal bags would be more suitable for Dad. Yesterday Dad was able to change the bag in the privacy of his bathroom, by taking off the soiled bag and tossing it in the garbage, and sealing the new one to the wafer attached to his stomach. I'll tell you about the wafer later. I think that small measure of privacy and independence will go a long way to getting some normalcy back into his life, which I hope will help in not just his physical recovery, but emotional as well. We get 60 of the disposal bags. So generous. Okay, I'm done talking about this for now. But I have so much more to say.