Day 29 & 30 - Quality vs. Quantity

Where do I even start?

Thursday I was furious. And then I spent quite of bit of time on the phone with dad yesterday and became increasingly concerned about him and about mom's condition. Mom was vomiting a lot. She wasn't eating. Dad was exhausted and I could hear the worry in his voice. He had spoken to their nurse, Kim, at the Cancer Center. She told him that if it got to the point where mom couldn't/wouldn't get out of bed, it was time to call 911.

I had talked to dad around 2pm. We talked for some time and then he had to go quickly because mom was vomiting again. I told him I'd call him back later in the day to see how things were going. In the meantime, I called and talked to Kiersten and my Aunt Judy and my Aunt Linda. I also called and spoke to Kim at the Cancer Center myself to find out when we decided mom needed more help.

Dad called me at 4:55pm. He said he had just talked to Kim again because mom was saying she couldn't breathe and her stomach was bothering her. Kim told him that because it was Friday night at 5pm, they wouldn't be able to get an appointment at the hospital, so she thought it would make the most sense to call 911. I'm not sure why he called me, except looking back, I think he just needed confirmation that he should call 911. He put mom on the phone and her breathing was obviously labored but she said she was trying to just calm down. I told her the medics needed to at least come and assess her and told her to put dad back on the phone. I told dad to call 911 and that if I hadn't heard from him within 20 to 25 minutes I'd call him back to see what was going on.

25 minutes later, I called dad. The medics had just put mom in the ambulance and were heading to the ER at Providence Everett. He was getting ready to drive up behind them. He said mom's vitals were okay, but her blood pressure was very low. I told him I'd be heading right up and left about 5:30pm. I was blessed with wonderful traffic for a Friday night and made it up to Everett in under an hour. I was in the ER with mom and dad before 6:45pm.

The goal in the ER was to drain mom's stomach, but she needed to be stabilized first. For some time there was talk of draining her stomach and sending her home, but as test results started coming back, it became obvious that wasn't going to happen. Mom had an incredible nurse by the name of Chuck. We felt that was appropriate. :-)

Dad went home about 10:00pm and between then and 2:00am, mom had a lot of blood taken, had lots of fluid put in her (she had already had a bladder catheter inserted to measure urine output), and finally had 4 liters of fluid drained from her stomach which instantly helped her breathing, but did nothing for her blood pressure which at one point was 47/29.

Mom was given medication to help bring up her bp in the ER and it was inching it's way up. Her temperature also inched up to a point where they finally had to administer antibiotics for concern of an infection.

The ER doctor came in to give mom a run down of her situation and it was as follows... the fluid that was drained from her stomach was infected... it looked as though she may have pneumonia... and her blood count was very low quite possibly requiring a blood transfusion for which she signed a consent before heading up to her room. The doctor then said she would be moving to ICU. That was a reality check.

Finally around 2am, mom was up on the 4th floor and met her new nurse, Ernie. When Ernie brought me back to mom he told me that he had asked her some questions. She didn't know what month or season we were in, but what he thought was funny that her answer to the question, "Who is the US President?" was "La Bamba". We did have some humor throughout all of this.

Mom also met the ER Doctor, Dr. Tie. He was incredible and really laid things out in black in white. One of his concerns was mom becoming septic. He explained the normal protocol of placing a catheter in the neck. But then he looked at mom and asked her if that felt like too much suffering for her. He knew she was intending not to continue chemo and he wanted to find out exactly what mom was wanting in terms of care. She said that she didn't want the catheter if it became necessary and Dr. Tie completely understood. Dr. Tie also went over life saving efforts with mom. This was hard. To hear her say she didn't want any was incredibly difficult. To think that no CPR would be done was really hard to hear. But I had to respect mom's choices.

Ernie was an awesome nurse and within about 3 hours had mom's bp coming up and her kidneys finally working again. After having a bladder catheter in at 9pm, we were finally seeing urine at 5am. Mom's color was better and she was feeling so much better. Mom dozed in and out. I tried sleeping on two uncomfortable chairs. What I had done a very poor job of was taking care of myself. I was dehydrated and hungry and was become dizzy and nauseous every time I closed my eyes. Thank goodness for my dear friend Shannon who texted me at 6am to find out if I was still at the hospital. By 7:45am, Shannon arrived with a hot latte, one of my favorite Starbucks sandwiches and a bag full of snacks and fruit and another bag full of bottled water. All of which truly saved me. She was my angel this morning. I love you Shan!

By 7am, and shift change, mom seemed to be continuing to improve. Her new nurse, Julia came on shift and we would spend the rest of the day with her.

Dad arrived back around 11am and Michael and Kiersten weren't too far behind. The new ICU Dr. came in and said he did feel mom was improving, but she still needed to be able to keep her blood pressure stable without all the meds. There was definite concern still in his face, but he did feel there had been some improvement.

Not long after, the on call Oncologist, Dr. Condon, came in. He was a very nice man and he called mom, "Mrs. Barr" a few times and mom told him that she didn't want any more chemo. He already knew this, but at this time, he started calling her "Nancy" and he told her that in his professional opinion, she was making the right choice. I think dad needed to hear that. Although none of us wanted to. He said that after some consultation over mom's case, he felt that perhaps this actually was liver cancer which is incredibly hard to treat. He told all of us in the room that if it was his wife or his mother, he would want her to stop the chemo too. He said at this point, it was really about QUALITY of life vs. QUANTITY of life. Mom was so very grateful to Dr. Condon, and I spent most of the time trying not to completely fall apart.

Reality was setting in for all of us. We were no longer looking at prolonging mom's life. We were looking at making what she had left as good as possible. Dr. Condon was so incredible and Julia stayed in the room and held mom's hand. Hospice was discussed and the intent was that when mom was discharged from the hospital, she would return home with daily hospice care. I think that really felt good to dad and took some pressure off him.

I think this conversation took a lot of pressure off of mom too. The decision was made. She knew how things were moving forward. She told me last night in the ER that she wasn't afraid to die. I told her I was afraid of her dying.

Dr. Condon told mom that she was looking at probably a couple of days in ICU and maybe a couple more on the Oncology floor. This, for me, was tough to hear because I knew then I couldn't do nights anymore because of childcare issues. I was going to have to go home tonight and get some sleep because I got none last night. And as I write this, mom is alone at the hospital in the ICU and may very well be getting a blood transfusion. But I left this one up to God and told him I needed him to direct me in the right direction and that direction pointed me home so I could get some rest and see my boys. As I write this, Olly's birthday cake just came out of the oven as well. I don't see myself being around much the next couple of days and this is the least I can do for him as his birthday is Monday. But I also know that without rest I can't take care of mom very well. So, I have to believe that she is in good hands at the hospital. Her night nurse will be Ernie again and I know he'll take good care of her. Julia took down my number and Michael's number and told me that Ernie would call if he felt that anything was changing with mom's status. So, right now my goal is to spend a little time with all my boys at home, finish the birthday cake and then get a good night's sleep to prepare for tomorrow when I will head back up to the hospital for the day. I think I'm taking the boys up because Olly has to take Blake home and I don't want him to have to haul all 3 kids around. My wonderful Shannon has already said I could drop the boys off at her place since I can't really have them in the ICU.

So, that's the abbreviated version believe it or not. ;-) The in between points are all the conversations that were had. I had a lot of time with mom. Much of it was spent in silence, but during some of it stories were shared. When Michael and Kiersten and dad were all there, there was definitely some laughter. And then the conversation turned to next steps. We talked about cremation and where they have burial plots and catholic funerals. And then mom felt she wanted to have people over to which I was SO pleased. She wanted to have a party. And so that's our next step. We're planning sort of an open house for people to come laugh, share stories, and say good-bye to mom. We're trying to plan it quickly because we honestly have no idea how much time there is left. Right now were are looking at Saturday, May 2nd. I think this is one of the gifts to losing someone like this. The opportunity to say good-bye. Mom knows she will most likely be in the living room in her hospital bed, and she's okay with that. She wants a celebration. And we're going to give her one.

And as I sit here, the tears are coming again. I am exhausted. I know after an all night birth my emotions are very wacky. But the tears don't really stop now. I cried much of the way home on my drive tonight.

The small goodbyes are getting bigger. I sit here tonight knowing mom is in the hospital without us. She wanted this. She sent us all home. She will probably sleep much better. But I am so worried that something will happen. She'll stop breathing and no CPR will be performed per her request and my last good-bye was my last one. But I also have put my faith in God that if I was supposed to be there tonight, I would have been there.

And I will head back up first thing in the morning. I will spend another day at the hospital. More conversations will be had. More good-byes. Each one hurts more. I feel I'm counting my time with mom in days now, not weeks, not months...but simply days...and that's terrifying. She is dying. She will be gone soon. And my world as I know it will be over. How can this woman just simply be gone off this earth? How? It's not fair! It's just not fair. I know I will carry her with me forever and I will share stories of her with my children. But she will be gone, except in my heart. My heart that is currently shattered and broken. I assume some day it will be back in one piece. One piece with many scars. I'm just so scared to walk through this. I am just simply so scared.

But for now, mom wants a celebration of her life. She wants to say her good-byes. That I can give her.

For those of you who are family and close friends, please make some time to come laugh with, reminisce with, and say good-bye to Nancy. To my mom. The the woman that made me who I am today. The woman to whom I owe my life and these 2 beautiful children of mine. Please come share your stories...bring pictures if you've got them. Come celebrate the life of My Mom. It deserves celebration. This earth will be missing a very special piece when she is gone.

Thank you to all of you who have contacted me to offer your love, support and prayers. They just keep coming in and they mean so much to me and all my family. We are surrounded by love. And that makes our loss just a little tiny bit easier to bear. We love you all!