Thursday, July 22, 2010

It is NORMALCY I miss the most... living with his terminal illness.

Shelle Edit: I have been reading Lilly's blog for a very long time now.  She use to give away baskets of stuff to those that donated to her cause.  I was a winner of one of them.  But I didn't donate because I could win something, I donated because Lilly and her story became one I felt close to, if that makes any sense.  Her blog is updates of her husband sprinkled in with tid bits of her daughters comings and goings. I remember the first time I saw a picture of her with one of her daughters and it was no surprise that she (and her daughter) were absolutely beautiful.  She is proof that sometimes someone is SO beautiful inside that it just can't help but show through to her outside and I think her daughters are the same way.  I was so happy to have Lilly volunteer to write this post.  I had no idea she even read this blog, but I am so happy she is sharing this with us.  Lilly is actually on vacation today but she wanted me to post this WHILE she is on vacation with some friends (which she hasn't been able to do because of her situation-so we are really happy for her) because when she is at home she is too busy.  She is going to try to reply to comments but I know that she will appreciate any response or comment she gets today.  After reading this, make sure to go over and read her personal blog.

R and I have been married for many years. We have 3 beautiful daughters that keep things interesting. It never ceased to amaze me how nonchallently R could walk in a grocery store and pick up 3 different boxes of tampons for 3 different women in his house that couldn't agree on even the simple things like "leak protection vs. baby powder scented vs. dry weave". We always had a normal marriage, both working long hours, focused on climbing that corporate ladder. Of course, days off were spent trying to get caught up on the mountain of laundry that had accumulated, vacuuming, mopping, yardwork, grocery shopping, meal planning....etc. The kinds of things all couples deal with. Normal things. With it came the arguments about whose turn it is it vacuum, cook, fold, iron....again, the normal couple things. Admittedly, I'm a Princess and R ALWAYS ended up doing most of the household chores. My job and my Princess-ship took up a lot of my time!

One Thanksgiving day, R told me he thought he had a bladder infection. What? He had never been sick and I was sure this was a ploy to get out of putting up the Christmas trees. I had that day planned down to the last minute! It turned out that this was no ploy. This "bladder infection" was actually bladder cancer, stage IV by the time he became symptomatic. A death sentence. He spent months in ICU, a wonderful team of doctors pulling out all the stops to keep him alive from day to day. He's still with us, barely hanging onto life on most days, making me laugh on others.

R was always the caregiver. If our girls threw up, they called for Daddy, they knew I couldn't handle it. I would puke right along with them. Cat had a fur-ball, R to the rescue! Skinned knee? Broken bone? Rash? R ALL.THE.WAY! He was always so strong and just had a natural knack for doctoring. I couldn't even take care of myself!  I remember cutting my finger slicing tomatoes one day and passed out on the spot. No one I know has such a gentle grace as my R.  When he got sick, it was very fast. We had no time to prepare for the changes that were about to take place. Since he became ill, it has been an endless stream of catheters, NG tubes, ostomy bags, JP drains, nausea, and chemo. He has had to come to terms with having to relinquish his care and his privacy over to someone else, and I've had to learn to handle all the caregiving without throwing up! Some days are certainly harder than others, on both of us!

I know all about the 5 stages of grief: denial, anger, depression, bargaining and finally, acceptance. I have watched my husband go into, and come out of each stage. He is in the acceptance stage now. He talks to me very matter of factly about hospice, the life insurance policies,the burial plots. He has such peace now. Me? I'm still in the anger stage. I must have stopped retaining anything after that chapter when I read Elisabeth Kubler-Ross' book way back in my college Psychology class. I'm mad at everyone from his workplace where he handled the deadly chemicals that caused this cancer, to the Doctor who botched his original surgery, to the nurse at the Cancer Center that was rude to me one day, to the produce manager at Winn Dixie who was out of fresh Artichokes and everyone KNOWS that green leafy vegetables fight cancer cells, to R for getting to that acceptance stage before me and leaving me boxing with the world. Our roles have definitely switched....

Am I telling you this to get your attention? To show you how trivial your disagreements with your significant others are? HECK NO! In fact, if God would grant us a miracle and heal this wonderful man, the first thing I would say is "Thank you, Lord". The second is "Ummmmm....I believe it's YOUR turn to vacuum!". That's normal, and it's normalcy I miss the most. As much as I would love sleeping curled around my husband, as much as I miss making love with him, and our 2 am runs to Waffle House because I'm craving bacon and pecan waffles, I would LOVE to have a nice argument with him. So much, that earlier this week he made a comment about Don Henley (who he KNOWS I love) and I bopped him on his bald head with a throw pillow from the couch and called him a
GOON! Felt soooooo good!

Love your it to the fullest. Accept that there will be disagreements, I would worry about anyone who didn't have them. And KNOW that one day, you may have to withdraw from that bank of memories to get to the end of that day. So, make them good ones~



Anonymous said...

damn girl that really really sucks.
I hate anyone has to deal with that.

TisforTonya said...

you may not have WRITTEN it to point out the triviality of my disagreements with my spouse... but now I think I have to go and have a good talk with him anyway.

Thanks for sharing - for baring your princessy soul with us!!!

Unknown said...

This is so very well written and so very true. It also makes me want to go home and fight over whos doing dishes tonight.

Shelle-BlokThoughts said...

Lilly-I loved reading this the first time, and the second, and the third. When my BIL was diagnosed with a terminal disease I think it opened my eyes to settings priorities, like it's okay once in a while if the bathroom doesn't get cleaned that week because wqe decided to go out or something--but after reading this, I also now believe it's good and healthy to punch him in the arm when he disagrees with me!

Hope you're enjoying yourself on vacay!

nitebyrd said...

I imagine that is the worst, things not being "normal". You've expressed it so well. I'm glad you have such good memories to draw from and that you'll have more to add to them.

wendy said...

Now at age 59 and my hubby is 62, I start to "wonder" about our mortality. I am fearful of being alone. NORMALACY is a blessing for sure.
Things change so fast.
I often wonder how strong I would be.
I don't have alot of faith in myself.
God Bless you and your family

Mrs.Duran said...

I am just sitting here with tears in my eyes and my heart is broken for you. Almost everynight I plan my husband funeral, crazy thing to say but being married to a police officer it is something you do. I wouldnt really know what to do if he didnt walk in the door the next morning. It scares me more then words could even express. Like your self he has always been the care taker, I dont know where to go to get the oil change or get the new tag or any of that stuff I would be lost, wouldnt know what to do. I will be praying for you both!

roy/elisabeth dean said...

guys, it's Lilly! I am soooo sorry, we ended up spending the day yesterday in Oatman, AZ where there are hundreds of wild burrows that eat carrots out of your hand, re-enactments of gun fights and gift shops galore selling turquoise jewelry, but NO cell service for AT&T customers! Having a blast, lost money I didn't have in the casino, but getting my batteries recharged today in the Colorado River! Thank you so much for your sweet, sweet comments...y'all are awesome and I promise to do better next time~ come see me!

Anonymous said...

This is, I think, one of my favourite posts. I'm terribly sorry you and your family are having to deal with this. It's not fair, as you very well know.

Sending you hugs and prayers.

Welcome to the Garden of Egan said...

That was an incredible post. Thank you so much for sharing it.
I can't fathom what it must be like and I pray that you can have some normalcy.