Thin Line....

Sunday, October 27th, 2013 

3:30pm

Mom was finally let out today since she was able to get through yesterday without throwing up once.

 She went in weighing 115lbs and came out weighing 105 lbs which means we have some serious work ahead of us especially since all dairy, wheat,fiber, raw vegetables and fruits are out.

  Things have been a little rough the past few days between mom and I when it comes to our roles, putting us both on edge. 

There is definetly a thin line between caregiver and patient and mother and daughter. From a caregiver's point of view I feel I know best, but from a daughter's point of view I feel guilty at times when I take my mother's autonomy away.  

Although I know I do it for her own good, it shouldn't have to be this way.  I don't like having to take the car keys away from her and telling her she can't drive because she's had too much pain medication, but I do. Or that she can't smoke in bed because she's constantly dozing off and could burn down the house, but I do that too.  This past week has weighed so heavy on my heart.  Being back on my old floor for the first time in almost a year on the other side of the call light was very strange. 

 I found myself scrutinizing every move everyone made from the nurses to the doctors, and wondering if all the decisions being made were in the best interest of our mother. Wondering if after she dies I could ever want to go back to working in oncology or even a hospital setting at all. Watching her hallucinate become defiant and just mean at times.

 I wondered if this is what it's going to be like in the end for us. I felt sad, but also angry that something so insignificant like losing my wallet today, could let all these emotions come rushing out. Without thinking in a moment of frustration, I asked myself out loud in front of mom "If there's really a god, why do these things keep happening?" Why does mom have to suffer every single day with this miserable cancer. Why can't life just go back to the way it was B.C.( before cancer)?

Of course we know there are 7 stages of grief and I've been through all of them at least a couple times this week. There are just days I wish we could have a do over just this once. Been slightly pushier and convinced her to have gone to the doctor more often. Convinced her to have her stomach removed even though she kept testing negative for cancer. I'd like to  forget things she has said that have cut us like a knife while under so much medication and delusional from sleep deprivation and malnutrition. Things that we may have thought to ourselves or responded back out of anger, because are skin is only so thick. I can't pretend to begin to imagine what it's like to be a warrior like my mother, living every single day feeling mentally & physically fatigued and knowing your going to die. However as a caregiver it is physically as well as mentally exhausting watching someone you've loved your entire life, turning into someone else, and slowly seeing their energy & life, drained right before your eyes.

 It's hard to believe this was only a few months ago, but it just goes to show how everything can change from one day to the next..... 

Http://www.youtube.com/watch?v=m4OTP0j8Ils

Take a chemo break.......

Friday, October 25, 2013

8:26pm

Cindy:

Today marked day 7 since mom started throwing up everything.

I finally went home for the first time in a week to pick up a few things. When I finally got back to the hospital I was sad to discover mom had been put back on a clear liquid diet because she'd been throwing up bile and having pain again. In this short week she's lost over 10lbs and the lack of food isn't going to help,but is necessary in order to give her colon a chance to rest and recover. When the oncologist came by a few hours later she let us know she wouldn't be resuming mom's chemo until mid-November so she could have some time to recoup from the infection, inflammation and malnutrition she's been going through this week. She slept a lot today, but eventually got a energy spurt, took a shower and stayed awake long enough to talk to our brother and tell him about my tripping while carrying the vomit basin. Apparently that's one incident I'm never going to live down,but at least everyone can laugh about it now:-). To lighten the sad mood in the room she asked me to pick up a big bag of candy to give the nurses and doctors whenever they come in, so her room has been pretty popular to say the very least and you'd be pretty amazed how many uses you can get out of a dinner cover. "We need to get out of this place before I start posting these ideas on Etsy".:-) lol

On the up side the views not to bad....

Hurry Up & Wait...

Cindy:

Monday, October 21, 2013

So since this past Saturday mom has been throwing up, I had been continuously pushing Iv fluids to keep her hydrated in the meantime. I just assumed the vommiting was a side effect from the previous Monday's chemo, surprise,surprise it wasn't. Yesterday when I had to pull over twice in less then 20 minutes for her to throw up on the side of the express way the two very small teaspoons of food she managed to get down all day, I called the doctor who told me it take her to the ER.  But instead of taking her straight to the ER, I diverted a little I decided to reschedule the ct that had been scheduled for next Monday to yesterday @ 6. Because from past experience I knew we'd be sitting in the ER for hours,only to finally get a bed and have to wait several more hours for someone to come get her and take her down to ct and then a few more hours for a radiologist to come up with a preliminary report. So after getting a ct of her abdomen, chest and pelvis we went down to the ER were we proceeded to wait for four more hours before finally being called in, this is what it looked like..

Once the ER doctor read the final report he explained to us that she had a colon infection and started her on cycle of several different antibiotics.

In the meantime she spent the last three days vommiting everything she's put in her mouth including medication and has lost almost 10 lbs since last week. 

Wednesday, October 23, 2013

Yesterday was a pretty rough day, but by last night mom was starting to feel a little better after all of our visitors came,stayed and laughed for a little while.

Luckily enough today after having something to eat for the first time in 5 days, holding it down, and taking around the floor she's doing a little better. Thank you for all the prayers and hope. All we can do is take it one day at a time...

It's been a while since a song has resonated with me on such a personal level and made me cry, because it's so relatable to so many of our circumstances. So I've decided to share it with all of you as corny as it may sound. Whether a caregiver or warrior I think either can relate to the sentiment behind it. I bought the "Fix Me Up" album on iTunes a few months ago and although my husband's sick of it, I love it! Enjoy!!

Here our a couple of links..

http://www.youtube.com/watch?v=FaiyxPK9ZRA&sns=em

http://www.youtube.com/watch?v=7zxXAtmmLLc&sns=em

Friday, October 25, 2013

Yesterday mom ate throughout the day and although she was still having nausea, pain and diahrrea she isn't throwing up which is great news.

Connie brought the kids to visit and that really raised mom's spirits so much so that I decided to keep the baby with us overnight, because I really missed seeing her all week and thought if anyone could take mom's mind off the pain for a little while Ellie could.

Boy was I right..

The doctors said should the other things resolve she might be able to get out of here as soon as Sunday, so I'm crossing my fingers.

Mom seeing Ellie for the first time in a week.

Ellie loving the night view from mama's room.

Palliative & Hospice Doctor All in one..

Cindy:

It's been a while since I've updated. About 2 weeks ago we met with the palliative/hospice doctor to talk about pain and anxiety management for mom.  Although mom isn't quite there yet and still continuing chemo the doctor thought it would be beneficial to begin to get to know the team so eventually transitioning would be easier as unlikely as that may seem. From the moment he walked in our front door with a smile on his face I'd knew she'd like him. He was very attractive mid-fourties with blonde hair and blue eyes almost reminded me of an older version of my husband except he had an Irish accent. Right off the bat my mom broke the ice by saying he was too young and goodlooking to be a death doctor and had she known they came this cute she might have switched over to hospice sooner. He laughed and yet was very empathetic, knowing her joking was just her way of dealing with her scared feelings. He had an awesome bed side manner to say the very least. Best of all he came in asking all the right questions and took control of mom's pain issues, and modified most of her pain medications so she's been pretty pain free since ,while still being able to stay awake for a better portion of the day.

I'm crossing my fingers it's not a short lived tolerance and this feeling lasts for a while.

One of the biggest issues she's struggled with over the past few weeks has been the pain in her feet. Which has kept her practically walking on her tippi toes and is more than likely caused by the 5fu in the doctors opinion. The Dr. ended up giving her lidocaine patches which are worn 12 hours on & 12 hours off and can only be used when she isn't planning on getting out of bed because they completely numb her feet. Her morphine is up to 100mg three times a day and Dilaudid 8mg as needed every 2-3 hours. He also switched her from 2mgs of Xanax to 2mgs of lorazepam (I'm just praying she doesn't have hallucinations like most people do). The Marinol has helped bring her weight back up to 120 this week which is always welcome.  

October 17,2013

Although, mom's cancer hasn't spread any further as of our last ct almost 8 weeks ago. After chemo this past Monday she was pretty tired and out of it, having a pretty hard time walking without holding on to me. 

Today her oncologist called me to ask me 

If I thought it was time to have a discussion with mom about stopping chemo to enable her to have a quality of life.  I explained to her that as long as she's of right mind and chose to continue chemo I would continue to support her no matter what. But at some point you have to stop and wonder to yourself, how much can one body take?

In the meantime we hold our breath and wait for her ct scan on Monday and it's results ...