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....