Mama Lou

When Mom was first diagnosed back in February, I had a brief private conversation with Dr. Frank...the ER doctor who had the incredibly tough job of telling us Mom had cancer. I remember him saying to me "this is going to be really tough". I said I knew, I mean we had just done this song and dance with Dad not even 3 years ago. Truthfully, I did not know the kind of tough that was ahead or how different the end of life journey would be for Mom in comparison to Dad.

This week is the start of our fourth week into hospice care for Mom. The last month Mom has had many wonderful visitors- family and friends from many different parts of her life. Last week her decline was becoming more apparent, everything from decreased appetite, difficulty swallowing, decreased mobility, to increased confusion... just to name a few. It was tough to see her go through these changes but we knew that the end was getting closer and it was time for us to spend time just Mom, Kristen, and I. 

Thursday, Mom started becoming very restless. She was up and down from the couch, to the kitchen, to the bedroom. That night I was up with Mom every 20-30 minutes the entire night. She kept wanting to go to the bathroom, change her pajamas, get out of bed, etc. After speaking with her hospice nurse, Trish, she said all of her changes and restlessness were signs of her approaching end of life sooner than later. Mom wanted Trish to always be honest with her so we had to have the tough conversation with Mom about what was happening. Truthfully, we had been avoiding it because we did not want to crush her spirit and ruin any hope of her meeting baby James in a few weeks. The conversation was emotional but Mom understood and we set a new plan in place. 

Mom's medications were changed to three liquid medications, morphine, ativan, and haldol. The morphine to continue to manage pain (which she has not complained of in weeks) and the other two to help her relax, sleep, and not be so restless. The restlessness continued day and night the entire weekend along with increased confusion. Her actions made sense in her head but not always to us. For instance, she asked for her "smokey thing" (eCigarette) as we call it, and instead of smoking it she was touching her toes with it. I doubled and even tripled some of her medication doses hoping that would settle her down but it honestly seemed to do the opposite. To give you an idea, what I was giving Mom would make my most combative, insane, patient in the ER sleep for 12+ hours straight. Kristen chose to say her goodbye's to Mom last week as it has been really hard to see her the way she is. With that being said it was just me managing her care (with the help of her amazing friends Sharon, Mo, Kathy, and my husband Aaron) and after 4 days of chasing her around day and night I knew this was too much for me, even with help, to handle. 

When we originally set up hospice, Mom was adamant about passing away at home. It was 100% the hardest decision I have ever made to change the plan and place her in an inpatient hospice facility. I felt like I was betraying her and not following her wishes. I was worried that she would be upset with me, or that she would wake up if I wasn't there and feel abandoned, among so many other emotions. However, after Mom's hospice nurse came to see her on Monday and saw exactly what we were dealing with, she said whole heartedly that an inpatient unit was the best option for Mom. They would be able to more closely monitor her medication and adjust them so her mind and body can relax. Terminal Agitation or Restlessness is a real symptom of dying patients [especially those that are younger and may not be fully at peace with dying] and is what Mom is experiencing right now. This website does a good job at explaining it. Since Mom is such a fighter and healthy aside from what organs the cancer has effected (affected? its late I don't know the difference at the moment..) her body and mind are resilient and are not tiring as easy as the average person. It is pretty impressive, and I would expect no less from my warrior mother.

Mom has been at a wonderful hospice facility through Hospice of the Valley for the last 24 hours. The experience has been overall a positive one- she has a beautiful private room with a patio, amazing staff that put their heart and soul into giving her the best care possible, and she has had multiple few hour stretches of sleep throughout the day and night. Even though deep down I know she is in the right place, my heart breaks every time she wakes up because she says "ok I am ready to go home now" or "is it time to go yet?" with a sassy and annoyed tone.  She has these moments of clarity sprinkled within her confusion which makes it so hard because we know Mom is still in there at her core. I hope she knows this is the best and that she is here because we love her. Why do the things that are best for our loved ones feel so unfair at times?!

Thank you for the continued love sent her way, I read her every card, text, email, etc. Although she doesn't respond like she used to, they saying hearing is the last sense to go so I know she keeps all of your love deep in her heart. 

Lastly, it was pretty cool last night to see that an article written about Mom in the Arizona Republic made it's way to the front page of USA today. While I hoped the article would touch a little more on prevention- I think Mom's story is enough to remind people to get your check up's and listen to your body. It was another amazing tribute for my amazing Mama and I am glad the world gets to see just how incredible she is. 

One last BFF girl's night, complete with matching PJs

"Flat Mama Lou" made it all the way to Sydney, Australia!

Happy Easter! The Easter Bunny (aka my husband) dropped off our favorite treats on Sunday. I think my heart exploded.

Aaron set up a 4D ultrasound so Mom could meet baby James (did I win the husband lottery or what?!). She ended up not being able to go to the appointment with us, however loved the pictures and video. She said he looks like Aaron :)

Hi all, just a quick update for you today while Mom is napping. We have been having a low key week filled with stories, naps, and card/message reading. The outpour of love and support for Mom is breathtaking. Monday she had almost 30 cards in her mailbox we could not even believe it! Although, I shouldn't be surprised, my Mom is pretty darn amazing. She is lucky to be loved by so many. I am sure many of you have read my Uncle Rex's tribute to my Mom on Facebook from his most recent flight, but I must say it has been neat to see the support from people that have never met Mom or our family- whether they are Southwest employees or just passing readers. His post can be found here.

The Dammit Doll has been a big hit, so fun to see everyone's pictures the last few days! Unfortunately, it seems the doll has been taken as it was not up there this morning when my Mom's brothers hiked up! Hopefully it gets returned ASAP :)

Many of the Mama Lou supporters!

Good morning and happy Tuesday all!

It has been a little over a week since Mom's first chemo and a lot has happened to say the least. Lets just dive in, we have a lot to talk about.

Chemo was extremely rough on Mom. Tuesday was ok as she still had steroids in her system from the chemo, but she was exhausted and achy. Wednesday she woke up was in excruciating pain and she was a little jaundice (aka yellow if you aren't familiar with the medical terminology) in the inner corners of her eyes and under them. While this is obviously not normal, I wasn't sure if this was part of her disease process or a side effect from the chemo. We called the triage nurse at Mom's cancer center and she said not to go to the ER unless mom was vomiting and/or having diarrhea and she would make a note for Dr. Sud when we followed up with him Friday. Shelly (one of Mom's BFF's) and I watched her become more yellow throughout the day as she rested from the chemo. I've never seen anything like it (by the time they get to the ER, people are usually REALLY yellow. We will go over why she specifically was yellow in a little bit).

Flash forward to Friday 3/4, Shelly and Mom went to Dr. Sud's office for her follow up. Dr. Sud asked a few questions in regards to Mom's coloring and sent her straight to the ER to see what the problem was. I had the stomach flu that day so I couldn't be there but I knew she was in the best hands (have I told you I work with the best, most intelligent, hard working, caring, doctors, nurses, techs, etc? Well I do, and it sure makes not being at the hospital with your Mom a little easier).

Mom stayed in the hospital Friday-Sunday. They ran every test and lab in the book, consulting with various departments. After all was said and done, the final word was that the cancer had spread in her liver at a remarkable rate. A tumor had completely blocked off her bile duct (Since my coffee hasn't kicked in this morning I think this website does a pretty good job of explaining the function of bile duct ect.) Gastrointestinal doctors and Interventional Radiologists looked at all of Mom's scans and concluded that no stent could be placed or surgery could be done to bypass the tumor. The only option left was chemo but that really was not an option either as the chemo is excreted through the bile duct which is blocked, not to mention chemo cannot be done with bilirubin levels higher than 2..moms was 12.4.

We then had the tough conversation with our oncology team that since there was nothing medically to be done, hospice was our only option. It still knocks the wind out of me typing it. It honestly feels like a sick joke because a month ago our sweet Mama Lou was flying the sky's and in perfect health (at least from how she felt and looked-cancer is so fucking sneaky sometimes).

We are heartbroken. Sad. Mad. I think we have all had every emotion in the book. You can't always control the cards you are dealt but we sure are soaking up every second possible. We have been asked many times about how much time we are looking at, and truthfully how can you ever know? However, looking at the progression of the tumors over the last few weeks, her cancer is growing at a remarkable rate. Since it has already blocked off a vital organ, we are probably looking at a couple of weeks.

We have chosen to use Hospice of the Valley for Mom's care through the rest of her journey. We have already met with her nurse at home and she is amazing. The hearts of the people that work for this organization just blow me away. They will be in and out and come to Mom's as frequently or infrequently as Mom needs.

Anytime you have an obstruction, it is extremely painful. We have battled getting mom's pain under control from the start and finally have her on medications that keep her relatively pain free. However, the dose is pretty significant so it makes her sleepy and honestly hallucinate a little bit. She has a hard time focusing when reading but we read her every card and note she gets... I know she loves and appreciates them all.

Mama Lou has the best village, there are no words that will adequately express our gratitude for all the love and support she has. We thank you for respecting our privacy as we spend time with close family and friends. If you have any questions at all you can always email me at Laynereneexo@gmail.com or reach out to Sharon or Shelly.  I will keep you all updated through the blog, we love you all!