Living with Cancer continued

How do I describe our mother?  Mom has always been a very determined person.  Born in 1932, she was raised by a single mom and her grand-parents in Pittsboro, MS. She was taught to shoot a gun, plow a garden with a stubborn mule, to work in the garden, gather eggs from brooding chickens and gather wood for that huge wood burning stove to cook.

Words that describe my Mom..
Cautious
Stubborn
determined
Compassionate
Helpful
Creative
Quiet
Reclusive
Proud
Spiritual
Intelligent
Long Suffering
Witty
Hilarious
Piss and Vinegar
Commanding
Loving
Aloof
Curious
Poker Faced
Sly
A Force to be reckoned with

Ever since this journey began with Mom, we have been trying to figure out the best way to do many things.  My sister and I of course are going to share the "duties" of caring for Mom.  we are going to Love her through this life into the next.

I think the hardest thing for us to deal with is that Mom has from the beginning not exactly come to terms with the fact that this time she is not going to be healed.  At least not healed in this world.

Its hard to see the day to day, minute to minute changes that appear as the cancer invades her brain. Its hard becoming a caretaker of a parent. My sister and I share the care.  We are texting each other telling about each time pain pills are taken, or what she has eaten  or when the atomic poops happen.  Its important to keep each other updated on what is going on.

Right at first we had to set time limits for visitors because of a few little issues that arose.  At first I was with Mom the majority of the time because my sister was working full time.  But this week that changed as my sister left her job to help share the care.  She comes in the morning after she has dropped her daughter off at school and is with Mom until its time to back to pick her up from after-school.  We change out at 4pm and I start cooking dinner for Mom and my husband and daughter.  They come down to eat and visit with her.  Then after they go home, Mom and I settle in for the night.
 We watch Monday Night Raw.  Mom loves to watch the WWE although we do get a bit peeved at the direction it seems to be going right now.  I take my computer down and even though I don't have internet in her house, I watch DVD's or work on my blog.  Sometimes I wear my headphones and listen to music while I read.  All the while I can watch Mom as she sleeps.  Eventually I get sleepy and stretch out on the couch for the night.

Hospice started on August 8th.  Lisa and I knew that we were going to need help quickly and we asked if it was time.  It was a shock to Mom when Hospice came in but she sees now how much it has helped.  If she needs something all we have to do is make a call and the nurse makes it happen.  The CNA that comes 3 days a week to help us bathe Mom has been a God-send.  We have learned many new skills!

I've got serious skills in transporting a wheelchair and getting Mom into the wheelchair or on the potty chair.   Its taken us a while but we have learned Mom's cues as to how to move.  she has had to learn to trust us too.  She took a couple of serious falls but thankfully did not break anything.  The pressure of the tumors have her perception of things skewed.  We finally had to develop a 'dance' of sorts to get to the potty seat or into the wheelchair.

Mom's independence is very important to her and even though she is dependent on us for everything, she still tries to push herself up out of the chair.  Mom doesn't like to be pulled on or bear-hugged so we have to stand just close enough to lightly touch but mainly to guide and then those small shuffling steps saying left right left right and then back up and slowly down to the seat.  I told Mom she was going to have to teach the dance to Lisa because I can't describe it.  So now we all know what to do.  But as with everything else, as the cancer progresses and Mom gets weaker she is having to literally lean on us more and more!

During the radiation treatments and for a time after, Mom began what we started referring to as the Atomic Poops.  Lord have mercy the odor of the poison that was exiting her body was awful.  Here's a hint for anyone that is a care giver and your patient has a potty chair.  place two to three plastic bags in that bucket and fill it with an inch of clumping kitty litter, preferably the kind for multiple cats.  It does an amazing job of absorbing the most obnoxious odors.  After the 'astronauts' have dropped and your patient is cleaned up and back in the bed, all you have to do is tie those bags up and take it outside to the dumpster.  I can assure you that no animal in its right mind will get into your trash! The trash man may not ever stop at your house ever again tho!

We use a lot of humor as we care for Mom.  some people might wonder about us, but we have to find something to laugh about in order to not cry. Crying is reserved for shower time.

to be continued.......

Living with Cancer

Mom was diagnosed with Colon cancer in November 2013.  We spent our Thanksgiving in the hospital as she had surgery to remove the ascending portion of her colon.  There, in the lobby of BMHNorth Mississippi, we had an impromptu feast from Cracker Barrel of Turkey and Dressing and all the sides while she was in her room hooked up to beeping machines  and tubes.  It was a memorable meal and not necessarily in a good way.  But that was the beginning.  The good news was the surgeon got all of the cancerous tumor in her colon.  We would not know the bad news until several months later.

Mom got to come home from the hospital on the day before her birthday.  We were all frantically running around making sure that things were ready at home.  Coffee was making, the lift chair was back in the den (it promptly got stuck in the lift position and we had to get someone to come and put a new motor in it! and a dear Angel paid for that new motor!) my sister and I were making plans on the care schedule for Mom.  Life was good and we settled into a routine of caring for Mom.

Our lives settled into a routine of sisters passing in the drive way.  One coming in for night shift, one for day shift, one for weekends, one for weekdays.  Driving Miss Jimmie to the doctor, to the oncologist, to the beauty shop, to Belk for some cyber shopping from the car.

In January Mom began her chemo treatments.  6 pills a day for two weeks and then a week off when we would have to go to see the oncologist and give blood and get weighed and get a report.  Her tumor markers were still slightly elevated from the November surgery indicating that there was still something somewhere.  But where?  After surgery the number was 6.  In January when the treatments started it was 9.  In March the numbers had jumped to 16 and they did a CT scan to see if there were any metastases in her liver or lungs or bones. Nope it was not.  So we were still hopeful.  she continued to take the pills but then she started getting sick.  The Chemo pills were making her sicker and sicker and weaker.  Instead of getting better from the prophylactic treatments she was going backwards.  My sister and I were mystified.  Mom was losing interest in eating, she was not getting up and walking, she didn't have the strength to walk into the kitchen and get a cup of coffee.  Something was very very wrong.

I had to physically lift her into the Escalade each time she had an appointment.  She could not pull herself up into the seat. I was helplessly watching my mom go down and no one could tell me what was happening.  I suspected, Lisa suspected but the tests were not showing anything.

She took her last chemo pills in April and the oncologist said that she would be coming back in for a check up on August 13 for blood work etc. Mom wanted a big hamburger from Phillips grocery that day.  She was weaker than I had ever seen.
That weekend was the Relay for Life.

Mother was so weak at that event that she could not walk.  She wanted to stay but she was so upset that she couldn't get out of the cart, she started crying.  Erin took her home. We bought a sky lantern and Erin and she sat out on the porch and lit it and sent it aloft at the same time that the rest of the lanterns were leaving the football field.

May through June she continued to decline.  By July she was showing signs of something neurologically that was not right.  She would lean to left and had no balance and she was not able to hold food or liquids down plus she was losing weight at an alarming rate. The first trip to the ER was a bust.  They did some xrays and found nothing in her liver, lungs or bones.  She was a little dehydrated.  We went home.  A week later, on July the 12th, we had to make another trip to the ER and this time she was admitted for dehydration and vomiting.  It was frustrating that she would be so sick and vomiting and unable to walk in the morning times and by afternoon nothing.  What we didn't realize was, that was also a symptom of what was about to reveal itself to us.

Mom spent 5 days in the local hospital getting the needed rest and fluids.  But she started complaining about her vision and said she felt like she was falling down the rabbit hole.  (more symptoms!)  She said her head felt "full" and she I noticed she was not holding it upright.  She could not look up also and her words started the occasional and fleeting slurring.

I called her oncologist and moved her appointment up. That weekend we had to take her back to the ER.  This time to BMH in Oxford.  We gave them all the information starting with November and they could not find anything.  They checked, bones, liver, lungs.  Nothing.  You're clear...go home...My sister and I were telling them to check her brain.  But colon cancer rarely goes to the brain we were told.  Needless to say we were highly frustrated.

The afternoon I took Mom to see her oncologist, I had to get a wheelchair and roll her in.  They were shocked at her appearance.  She had lost 26 pounds.  I demanded a blood test for the tumor markers.  She was so weak she could barely stand.  When the dr. came in he said he was going to schedule her for a CT scan.  I asked if that scanned the brain.  He said colon cancer rarely went to the brain.  But my sister and I had agreed that we were going to dig in and demand an MRI.  He did some neurological questions and tests and scheduled it for that Friday....August 1.  The CT was scheduled for later on.  Oh!  And the blood tests showed the Tumor markers had gone from 16 to 45!  (But we didn't know that until much much later.)

On August 1 Mom and I got up early, and  made our way to the hopital for the MRI at 7:30AM.  she was sick as usual.  The ever present cup of ice was in my bag.  I rolled her into the hospital and down the hall and we waited for our turn.  The technician finally came and got us.  She is so claustrophobic.  His name was Ken and he was a dear compassionate soul.  He lifted Mom out of the wheelchair and laid her on that table and covered her was a warm blanket assuring her all the time and that it would not take long.

The initial images were made; he went back in to inject the contrast and came back and started the machine up.  I'm not a technician but I've seen enough and read enough to know that I was seeing that contrast agent going to two spots in her brain.  But then again what do I know.  Mom and I left and headed back to Bruce by 8:30.  We had gotten home and unloaded and I had just gotten her settled into her chair when the phone rang and it was the oncologist office.  I will never forget that frozen moment in time.  She said that we had to come back to the Cancer Center right away and that the Radiation Oncologist was going to meet us there and start radiation that afternoon.  I was stunned and stuttering and asked why.  You know the one..Why with a question mark and your voice is going up the scale.  That poor woman had to tell me over the phone that there were two tumors in Moms brain, that the neurologist that looked at the scans said were bad.   I felt my world start to implode.  I was still frozen with a goofy smile on my lips as I told her ok that it would take me an hour to get her back in the truck and up there, but we were on our way.

Then I had to turn and tell my precious mother who was fighting so hard to live, that we had to go back and see another doctor now for radiation because the MRI showed the reason she had been so sick.  There were two tumors in her head.  I watched her face as she shut down on me.  She went through the motions of me getting her back in the truck. As I turned the Escalade toward Oxford again, I called my sister and did the second hardest thing I could do that day, I told her over the phone that Mom had brain tumors and we were on our way to the Cancer Center to get set up for Radiation treatments. She met us there.

Mom was fitted for her mask for 10 radiation treatments.  Lisa and I listened as intently as possible to everything he was saying.  10 treatments, for palliative care, not curative.  They were aggressive tumors, the larger one pressing on the brain stem and the other deep inside more on the right hemisphere.  The unsteadiness and weight loss and nausea was all directly caused by them.  She would know everything up until the end.  It was bad.  BAD.  As in get your affairs in order today,this weekend, BAD.  Mom said she was going to fight.  He said that was good.  She needed to fight but that at the most, 6 months, but most likely, less.

Nothing like getting a punch in the gut.  Nothing like finding out that your suspicions are right.  Nothing like finding out your Mom is entering into the next level and it is the one where she is transitioning into the next life.  There are no books or advice that prepares a child to hear the words that your parent has inoperatable, incurable brain cancer and that the end of their life is very near and its now your turn to make them feel as comfortable and loved as you can.  There is nothing that can prepare you for having to have that talk with your parent that they must give your and your sibling power of attorney so that you can care for them and make sure that no one can come in snooker them out of anything.  There is NOTHING that anyone can say to make you feel better.  Your whole focus changes immediately and you just start taking things on a moment by moment day by day basis.

My Blog is hopefully going to show the reader how my sister and I are making this journey with our precious mother, to the end of her life.

...to be continued....