It saddens me beyond comprehension to have to say that Amber passed away around 1:15 Monday morning. This blog was a great outlet for her to be able to keep everyone informed and to mentally unpack everything going around in her mind, so that is my intention with writing this final post for her.
I'm going to try to pick up from where she left off in her last post. Amber had the tube in her right lung moved to hopefully be in the right spot for us to drain her at home without any issues. The new drain location seemed to be correct because her home health nurse and/or Don were eventually able to drain her every day and get a good amount of fluid off her right side each time. While it's not great that there was enough fluid to have to drain that often, it was nice to know that we could take care of her at home rather than have to take her to the ER or hospital for the more invasive and painful thoracentesis procedure.
Her wound care from her implant removal was going great. A home health nurse came daily for cleanings and bandage changes and eventually my mom was passed the torch and was able to take care of it herself. Amber usually just laid back with a towel over her eyes while this was done because she didn't want to have to look at it. This was usually a time for her to just get to chat with the nurse or my mom.
Amber had some very special nurses that were taking care of her. She really came to love Nancy, the nurse who was there most Mondays-Fridays. Nancy turned into more than a nurse, she was a friend and a voice of reason. Any anxiety or concerns that Amber had regarding her health or just life in general, she could run by Nancy and trusted whatever she had to say.
Last Wednesday, November 26th, Amber and my mom went to see Dr. Phillips. She was there for a check up and to discuss the plan for her current chemo moving forward. They had done some recent blood work that had shown that Amber's cancer markers had risen, which had caused her to worry about this appointment and what Dr. Philips was going to tell her. The appointment actually went pretty well. She was checked over and told that things seemed about the same. Amber and Dr. Philips talked over the plan and both decided that she would try one more treatment on this chemo, and then if they felt that things still weren't working like they should have been, that they would move on to the next drug.
Mom stayed with Amber the rest of the afternoon which mainly consisted of relaxing and some naps thrown in here and there. Mom had noticed that Amber was a little confused and sometimes wasn't making much sense. I think we all chalked it up to her not getting enough sleep at night and just being overly exhausted. Once Don got home from work, mom left to go back to her house to start preparing her dishes that we were going to take to Thanksgiving dinner at Don's brother's house the next day. Don and the boys were hanging out with Amber in the front room where Amber had been sleeping for the last few weeks since walking up the stairs was too difficult with her breathing the way it was. Since she had been sleeping on that couch, someone had always been there to sleep on the love seat beside her. That night Don and I both stayed (along with Justin since he didn't have school the next day) for a sleepover because we both were just very concerned with how disoriented she seemed to be and the fact that her Oxygen saturation dropped very low each time she moved. It was a very long night and it crossed both Don and my mind several times to call a nurse to come out or to take her to the ER, but Nancy, her nurse was already planning on being there bright and early Thursday, and each time we asked Amber if she thought we should call someone, she said no. We both honestly thought the confusion was due to a recent increase in her Xanax prescription.
We did call mom at around 6 Thursday morning to have her come out. Once she got there it wasn't long until Nancy showed up. Nancy, as I already said, was the voice of reason. She convinced Amber that she needed to go to the hospital. She estimated that she had about 40 extra pounds of fluid from her hands, feet, and stomach which was much more than the day before (if you remember from her last post, fluid buildup and swelling had been happening in her left foot and it would come and go.)
Because her oxygen levels were so unstable when she tried moving too much, we decided to call an ambulance. She called Justin and Ryan into the room and was able to explain to both of them that she would be going to the hospital and that an ambulance would be coming to get her just so they weren't surprised or too scared. They handled it well and once the ambulance got here, they both went to the other room to keep watching SpongeBob until they had loaded Amber into the ambulance, then they went to the front window to watch until they drove away.
Once at the hospital Drs and nurses checked her out and took some blood tests. It was found that she had a buildup of carbon dioxide in her body from not being able to breathe out enough to expel the waste. They also saw that there was fluid collecting on the left lung and around her heart. This extra fluid and the fact that we only had the drain on the right side caused the buildup of carbon dioxide. The CO2 buildup was the cause for all the confusion and disorientation she had been experiencing.
They decided to put her on a bipap machine which was a big face-mask which blew oxygen in and sucked CO2 out in attempts to lower that CO2 level. Amber hated that machine. It was big, and had to be strapped to the head for suction to work correctly. With her already being confused, it was hard to explain why she needed to wear it and keep it on. It was explained that if the bipap machine didn't work well enough to lower her CO2 levels, that she would have to be put on a ventilator which would work more effectively. While we all obviously wanted to try to avoid that having to happen, Amber and Don both discussed it and agreed that if it came to that point, she agreed that she wanted to be put on a ventilator. This was because it wouldn't be meant as a permanent thing, it would just be used to lower the carbon dioxide and then she would be taken off of it.
Friday morning they ran a lot of tests; chest x-rays, and echocardiograms, and also drained her left lung. Friday afternoon Amber asked to speak to Don alone with a social worker about her plans moving forward after this hospital stay. She and Don discussed it at length and she explained that she was just so tired and worn out with everything that has been happening. She decided that hospice would be the next step. Rather than keep trying to fight, Amber wanted to be able to enjoy the time she had left without chemo and the side effects that came with it; unfortunately, that time ended up being much shorter than any of us wanted.
Jess was able to book a ticket to fly in on Friday afternoon and was there by 11 Friday night. When she got there Amber was off the bipap machine and just on regular oxygen. The nurses had allowed her to take some breaks from the machine for her comfort because having it on was so uncomfortable and caused a lot of anxiety. She was also able to talk easier without the bipap machine so it was good that she was able to visit with us more comfortably.
By Saturday afternoon Amber's carbon dioxide levels had risen. She was placed back on the bipap machine and we were told that she would wear it for two hours and after that two hours, another blood test would be done. If the levels had not gone down enough she would need to be intubated and put on a ventilator. At this point, she was sleeping a lot and had fewer and fewer moments where she was awake and alert to talk to us. During those times she was talking, she was still able to crack us all up. She's really always known how to work a crowd, that sense of humor didn't fail despite her body failing her.
While we were waiting for those two hours to pass before they would test her blood again, a doctor came in and spoke to Don. He explained that Amber's right lung was pretty much spent. He said that fluid would continue to accumulate in the right and left sides and around her heart. This meant that putting her on a ventilator to temporarily reduce the CO2 levels would essentially just delay the inevitable. Because of this, it was decided that she would not be placed on the ventilator. That would have just been one more procedure to put her through and that's not what she wanted.
Don took Justin and Ryan in to see her, one at a time. They both got to kiss and love on her, and she gave them each a stuffed animal that she had used throughout the past two years. Ryan got a ladybug pillow pet that Amber had taken to her initial chemo appointments back in 2012. Justin got a stuffed dog that she had cuddled with constantly for the past few months. She used this dog to prop up her right arm because of the lymphedema and swelling.
Around 6 Saturday night, after finding that her CO2 had not fallen like we had hoped, a hospice nurse came in and removed the bipap machine. They put her back on oxygen from a nasal cannula. This was much more comfortable for her. No one really knew how long she would be like that, but she just slept peacefully breathing from 6 until around 2am. At 2, she woke up and was talking to us. We each got to tell her we love her while she was awake and could respond to us. These moments were sacred. She was surrounded by her husband and close family and we love her for waking up and giving those extra few hours with us before she went back into a deeper sleep.
Around noon Sunday, she fell back asleep and just rested and breathed. We listened to music, some songs that she had written in a journal that she wants at her funeral, and some songs that she just always loved. She constantly had someone by her side loving her and holding her hand. While a lot of these moments were filled with tears, there were so many good stories being told and memories being remembered that her last few hours were also filled with laughter, which is exactly how it should have been.
Since June 2012 Amber didn't really have a lot of say in what was happening to her. She was told by doctors what she needed to do to fight the cancer and she did it. This was the first time in so long that she had a say in what she wanted and what she felt was best. She took her life into her own hands and left on her own terms; she went very peacefully.
"Just know you're not alone, I'm gonna make this place your home." Amber has always loved this Philip Phillips' song and now the lyrics have a completely new meaning. She's Home now with family and friends who have gone before and were waiting for her. She's free from pain, sadness, anxiety, drains, and tubes.
That song also works for the rest of us who she left behind. "Hold on to me as we go, as we roll down this unfamiliar road." We have to try to find our new normal and it's not going to be easy, but she brought so many people together and we have to lean on each other. We are all so happy to know that she made this decision and it was truly what was best for her.
A visitation will be held at Lawn Funeral Home on Friday, December 5 from 3-8pm.
On Saturday, December 6 at Peace Lutheran Church, there will be a viewing from 2-3pm with the funeral service beginning at 3. There will be a reception to follow the services Saturday at a location to be determined.
Lawn Funeral Home: 17909 S. 94th Ave. Tinley Park, IL 60487
Peace Lutheran Church: 1900 E Lincoln Hwy, New Lenox, IL 60451