The Day My World Changed Forever

Tuesday came out of nowhere. Things had been relatively quiet Monday night. It's the first night I'd slept...since Friday? Our night nurse was an angel. I remember hearing her and my Mom around 3AM. My Mom was walking back to bed. Everything seemed pretty normal. As normal as you can get in the hospital.

We were up around 6AM. Prepping for my Mom's bone marrow biopsy. I'd been trying to talk her out of it. I didn't feel like it was necessary. Not at this point. Maybe we could wait. Until she was stronger. Or felt better. But she was still able to make her own decisions. So we had to let her. 

By 9AM she was having a lot of pain. I had been asking for hours, to speak with the oncologist on duty. I just felt like I needed a second opinion. Was my Mom dying? Was there something I could do? Was she just sick? And needed some help?

I managed to take a shower. And while I was in the shower, PT came around. My Mom was so exhausted! It took everything out of her to sit up. Then stand up. Take a few steps. And lay back down. The pain was unreal as well.

Everything started happening so quickly after that. PT was recommending her to go to an Impatient Rehab facility. PT and the Hospitalist were thinking Thursday would be a good day to transfer her. Because it had been a holiday weekend, we hadn't seen many of the people we should have. All the referrals were suddenly happening at once. Her Hospitalist came to see her. And noticed how different she was too.

Then the Bone Marrow Biopsy Team came in like a rush of bulls. Started prepping everything. No one had time to talk to me. I just didn't feel right about this. And my Mom's pain was getting worse. She hadn't really eaten in days. It was taking everything in her, to eat the small amounts she was managing. And that was only because I was feeding her. 

I know the drill when it comes to BMBs. I've been there for every single one she's had. As time has gone on, they've gotten more and more difficult to do. Mostly because my Mom's bones were getting so brittle. So it takes a bit longer than normal. She was in pain. We didn't have the normal doctor that she was used to.

Eventually, the doctor asked me to help. He was on the opposite side of the bed. His nurse was behind him. And someone that they were training was at the foot of the bed. He was a big guy. But completely overwhelmed by what was happening. He honestly looked like he might pass out at any moment. So I tried to comfort my Mom. I talked to her. Held her as still as I could. And watched...

The doctor was having such a difficult time getting a sample. He asked me a bunch of questions. I told him as much as I could. Eventually, after 90 minutes? He got what he thought was a good enough sample. Then the bleeding wouldn't stop. And they started calling the Oncology and ICU teams...

It was a lot to deal with. My Mom was crying in agony. Her abdomen was hurting her. We were having to keep pressure on the insertion point. I even had to help with that. While the team met outside the room to talk. And try to find some sort of bandage to assist with the bleeding. On top of all of this...we had to keep her as still as possible.

I don't know how long it took. I think the BMB Team was with us for about 3 hours. Eventually, the bleeding slowed. My Mom was given a gigantic amount of pain meds. That weren't helping. The fear in her eyes. Gosh, I can't get that imagine out of my mind. It's so hard to deal with. And to hear her cries. 

Eventually that team left. I asked the nurse again...if I could speak with someone from Oncology. I was sincerely considering...calling Dr. N. In his office. I was starting to get desperate. We hadn't seen anyone from Oncology. And my Mom had been at the hospital 6 days. I just needed to know...if it was time to just make her comfortable.

About this time, Dr. W came to see us. I think he could tell I was so stressed out. On the brink of a breakdown. The tears were only being held back, by pure prayers. Dr. W listened to me. And I to him. We looked at my Mom's chart. And her medical wishes. And determined that it was time for Hospice. He was sure, she wouldn't make it home. But figured we could get her to the Hospice Unit at the hospital. And that my Mom might have a couple of days. 

He hugged me. And for the first time, I cried. The stress of the weekend, finally broke me. To be honest, I had wished that we had been there a week earlier. Because Dr. N had been working in the hospital. Maybe I would have had a clearer mind. Just knowing I could have asked him anything. He was familiar with my Mom. Someone that I would have felt comfortable, having these tough discussions with. I also sincerely missed being in the Oncology Unit. Where I felt safe. Because the staff makes you feel safe.

As Dr. W left to go write the orders. So we could be moved in a couple of hours...I walked back into the room. Still shocked. So this was it? My Mom was dying. I didn't know how to deal with all of that news. My sister called. We'd been playing phone tag. The nurse came to check the bandage. Which needed to be changed for the 3rd time in about an hour. Obviously, the bleeding was still an issue...

I walked into the bathroom to talk to my sister. All of a sudden, I heard all this noise. And basically hung up on her. I walked out to the nurse in a bit of a panic. Trying to get my Mom's pulse. She had monitors on her ears, toes, and both hands. She called the Charge Nurse. They basically had my Mom upside down at this point. And everyone was trying to keep their cool. But I knew. I knew what was happening. I just felt it in the pit of my stomach...

I stepped out of the room. To let the staff work. To try and calm myself. I knew what was happening. But I didn't know how to process it. I walked to the area where the two towers meet. Sat down and looked outside. My cousin had text to see how things were going. I just wrote back. "It's so bad. Please let your mom know to come ASAP." I walked back into our unit. It's all just steps from my Mom's room, to this bench I was sitting on. And on the unit I sat on the little bench at the end of the hallway. Watching people running in and out of her room. Seeing all the chaos. And not knowing what to do. 

I was alone in that moment. And I knew I was about to be alone in this world. I knew that I was losing my Mom. Way too early in her life. She had so much life to live. And there was absolutely nothing I could do to help her. 

At this point, I see her Hospitalist running into her room. The doors fly open. The crash cart is being wheeled to her room. There is a nurse plugging it in. And I ran as fast as I could. The paddles were coming out. And I physically put myself between them and my Mom. I pleaded with the team to stop. To just stop. They were no longer doing my Mom any good.

Shaking. And with tears streaming down my face...I begged them to stop. I explained to the doctor, that Dr. W and I had decided to put my Mom on Hospice. And that he was putting the orders in. The Team looked at me...with pitty and horror. But they stopped. They tried to make my Mom comfortable. And tried to make the room as normal as they could.

Dr. U talked to me. That Hospice was no longer an option. That maybe the BMB was too much. But they'd provide Comfort Care. And he'd remain at the hospital, as long as my Mom was alive. I knew we didn't have much time. I knew it. Not just because of what I witnessed from my Mom. But because of the look in his eyes. The tone in his voice. And honestly...what doctor tells you they'll stay until the end. If the end is not near?

My Mom's nurse and doctor came in with meds. To make her comfortable. I asked if my Aunts and Uncles could come in. Would we be restricted to visitors? They assured me, we'd be OK. And they went to get the priest for us. By the time my Aunts and Uncle got there, the priest was there too. We'd just seen him.

I think he was as shocked as I was. He spoke with us. Tried to help us find some peace, as my Mom transitioned. Gave us suggestions of things to hold onto. We prayed. And after he left, I put on some religious music for my Mom. Sat by her bed. Held her hand. And prayed. 

I didn't want to be selfish. I wanted my Mom to be comforted at this time. I needed to be strong. To be with her. As scary as it was. As ill prepared as I was. As suddenly as it all happened. I wanted my Mom to be comfortable. And surrounded by peace and love.

We'd talked off and on. About her final wishes. She wanted everything done, to live. Except being put on machines for an extended period of time. She didn't want to suffer the same way my Dad did. She wanted to live. But only if she could live a life. I prayed that I was making the best decisions for her. Doing things the way she had wished. And not because I didn't want my Mom to die.

There were so many things we were supposed to have done. Places to visit. Things to experience. My Mom was supposed to be a Grandma at some point. There were so many more conversations we were supposed to have had. But in those moments, I couldn't think of any of it.

Around 5PM, my cousin came in. And in that moment, my Mom passed. We saw her take her last breath. After a few moments, we called the nurse. And she let the doctor know. Shortly, he came to exam my Mom. And to confirm what we knew...

It was a lot to bare. I left my Aunts, Uncles, and cousins with my Mom. And went back to that bench. I needed to call the Mortuary. All the big decisions. Who to use? What exactly did I need to do? I couldn't remember from 7 years prior. I finally made the call. Let the Charge Nurse know. I sent texts. Made phones calls. Barely kept it together. I don't even remember how I told my sister. I honestly don't. But I know I let her know.

At some point, my family came to tell me Goodbye. And I went to go back to my Mom. I spoke with the nurses. Who were going to clean my Mom's body and prepare her. They asked if I wanted her socks and jewelry. Was there anything they could do for me?

There are no words to express how difficult this was. How alone I felt. The staff was amazing. Dr. U kept his word. Stayed at the hospital. At the desk outside my Mom's room. I can still remember seeing him, when I left that night. My Mom's nurse stayed past Shift Change. They gave me time with my Mom. Alone. They packed up our belongings. All the snacks they'd brought us earlier in the day. Boxes and boxes of tissues. The Night Nurse came and sat with me. Let me cry. Assured me, they'd be there. If and when I needed anything. That night. In the future. Whenever I needed them. 

Eventually, the Mortuary came. Gave me some time with my Mom, after they had prepared her for transport. They gave me some meaningful gifts. And all the information I'd need in the coming days. And they were gone. They'd taken my Mom. And I was alone.

I sat in that empty room. Not sure which way was up. Not knowing how to put one foot in front of the other. Had I been stupid? Blind? In denial? Had my Mom been that sick? Did this all just happen this quick? I still don't have those answers. And probably never will. 

What I do know is, I'll never forget my Mom. I'll always think of her in this way. Full of life. Ready for adventure. And so excited to be in nature and surrounded by animals. We didn't have a perfect relationship. In fact, we didn't really get close until my Dad's passing. 7 years. Doesn't seem like it was long enough.

I feel like I could have done so much more. Made her life so much better. In so many ways, I feel like I failed my Mom. I tried so hard every single day. But it never felt like it was enough. Maybe we just never got past losing my Dad. But I feel like I could have done more. Been more. Provided a better life for her.

It's all hard. I don't know which way to turn first. I spent nearly all night on the phone. Once I got home Tuesday. Talking to an amazing family friend. And maybe got 2 hours of sleep. I took the dogs out on a long walk yesterday morning. And spoke with the Mortuary. But it was just a day of being alone. I needed it. Our dogs needed it. My soul needed it. 💜

Still the Best View

Can we start with...this has been a wild 24 hours. And not in a good way. I'm emotionally spent. My Mom was so down last night. I keep asking myself, am I in denial? Are things way worse, than what I am seeing?

But first, let's start with the good stuff. We had the most amazing ER nurse! Sometime around 2AM, he came into my Mom's room with a recliner. Sheets, blankets, and pillows. And for the first time ever, I had some decent sleep in the ER. 

To be honest, he was just a dream. Worked with the pharmacy to get meds. Let us sleep. And when the phlebotomist couldn't draw blood, he did it. So kind and gentle. I really appreciate good nurses. Martin was top tier.

This morning we woke up to this beautiful view. I mean, it never gets old. The best part of this hospital, is the view. The spectacular view. We've watched the hot air balloons go up for over an hour now. Some are starting to land. But it's a gorgeous sight! And the best way to start our morning. 

Yesterday was just rough. We hadn't seen a single doctor all day. Around 4:45PM a Hospitalist finally showed up. She seemed a bit annoyed. Is it me, or all Hospitalist like this? And honestly she seemed ready to go home. Like my Mom was an inconvenience for her. Then the tuff talk began...

Telling my Mom she needed to update her Code Status. That this is the end. And there is really no reason for CPR and/or machines. I mean, it basically sent my Mom in a downward spiral. She was so upset! Understandably so. And my Mom wouldn't back down.

Eventually, the lady left. And I struggled to get my Mom's spirits back up. But it's had me wondering. Is it really the end? Is she so much worse than we think? Is there no hope? I would think we would be having this sort of conversation with Oncology. Like if they feel like things are this bad, wouldn't one of them come to talk to us? Why put her through another bone marrow biopsy? 

End of life care and talk, should be a gentle topic. It should be something, you do with lots of grace. Have some care and compassion. This lady, basically walked in the room, pulled up my Mom's chart, and started the entire...you should just die speech. I 100% mean, she hadn't seen my Mom's chart until that minute. And immediately went into this conversation. 

I was basically speechless. I know we are definitely here until Tuesday. My Mom has a bedside BMB scheduled. I'm tempted to call Oncology, just to have a little chat. I NEED to know what's going on. What I should be preparing for. Like what the heck is going on?

By last night, my Mom was spent and went to bed. I just sat here wondering if I'm in denial. Is it worse than I think? I mean I lived through everything with my Dad. Am I missing a piece here? Just left with a lot of questions. That I hope to have answered. Between, my Mom seems to be doing much better. Had a much better night last night. 💜

We're Back

Pretty sure, I saw this coming since Tuesday night. But we're back. My Mom basically slept all day yesterday. I got her up, long enough to take her medications. And to eat a few bites of a breakfast burrito. I've been worried. To say the least.

Earlier she had a coughing fit, and couldn't catch her breath. Then she asked me to bring her to the ER. I called the Oncology nurse. Who promptly told me to get her to the ER. She'd be waiting to hear from me. Or she'd call 911 to meet us somewhere. Off we went.

Today I got to wait inside with my Mom. The ER was much busier. So we waited a bit longer. But still safely in the Oncology Corner. Honestly, I think my Mom's appearance is what allowed me to wait with her today. Again, they started off with X-rays. Around 5:30PM, I left to call my Auntie. To let her know what was happening. Then the new staff wouldn't let me back into the ER.

All was good. I took a walk. Updated family. Snapped a few pictures. And ultimately found a chair to sit on and read my book. But OMG it was HOT out there! I happened to get a chair right outside the employees door. So I was grateful every time it opened and blasted me with cold air. At shift change, that was quite nice.

At 6:30PM, I looked into the Waiting Room and didn't see my Mom. So I called the ER and found out she had gotten a room. An ER doctor came almost immediately and let us know, they'd be admitting my Mom. Because it was obvious she was having trouble breathing. The doctor could also hear crackling in her right lung. 

They started fluids, some meds, and electrolytes. It's looking like a new strain of the flu and the earliest signs of pneumonia. My Mom has had it before. So it was kind of likely to happen again. Even with her vaccine.

And because business is booming...we'll be spending the night in the ER. With Nemo starring at me. And a bed made out of 2 chairs. More than likely oncology won't have a room until tomorrow around lunchtime. But as long as my Mom is getting the care she needs, I don't care. 

I snuck off to grab some food around 9:30PM. Learned my lesson on Tuesday. But I missed the next doctor. The hospitalist. The nurse filled me in. By the way, he's awesome! We've never had such a great nurse before.

I had dinner. My Mom had half a milkshake and a little bit of a fish sandwich. But hey. That's more than she's eaten in 48 hours. So we'll call it a win. I also managed to bring a sweatshirt today. My tablet, a book, a crochet project, chargers, and my vitamins. I'm calling it a win. Because the last few days feel like a blur. Off to catch a little sleep. Hopefully. With Nemo and Dory watching over us. 💜

 

Always Grateful

We're very grateful today. My Mom gets to go home. She is super excited. Am I 100% convinced that she is ready? No. But I'm her daughter and her caregiver. So I tend to worry too much as well. 

I will never stop believing in miracles. Or in prayer. I'm super grateful that my Mom is doing so much better. I'm grateful for all the amazing nurses, techs, therapists, everyone in the food department, and all of the people who helped with testing. Also the housekeeper. She was so sweet. We also got the best visit from the Support Dogs today. It made my Mom so happy and excited!

Most of all, I'm grateful for her doctors. Her oncologist, whom we trust so very much. He always treats my Mom with such care and respect. To Dr. Iggy...he's been my Mom's doctor before. He is just so straight forward. And I appreciate that. We cannot forget our nephrology team. Who have been so supportive during such rocky times. 

I'm grateful. I believe that God is watching over us. He's listening to our prayers. And sending all of these amazing men and women...to take care of my Mom. I'm grateful. You just don't understand how much. My heart is so full...because my Mom gets to go home. The smile on her face...is worth a million words. Now we just pray for good test results. 💜

She Is Brave

 I keep telling my Mom just how brave she is. I don't think she realizes it. I think she doubts herself. My Dad's journey keeps creeping in. When you don't want it to. She thinks of everything he went through. And she gets scared. I get it. 

But with all her injuries. All the set backs. All the pain. My Mom is pushing forward. Yesterday was the first time, I saw her super anxious and not in full control. It was tough. And I was struggling with that. 

Because anyone that knows my Mom, knows how strong she is. She is fierce! The kind of lady that you don't want to fight with. I don't remember her falling apart when my Dad was sick. We all had that initial shock. Cried. And then picked up the pieces to help him on his journey.

Yesterday we couldn't calm my Mom down after her MRI. She's had them before. But something was different yesterday. And today, she needed a Lumbar Puncture. It's not anxiety before the procedure. So much as it's post-scan/test. And the anxiety isn't even about waiting on results. It's about the procedure. 

Today they needed to see if she could lay on her stomach or right side. And we were struggling. The techs downstairs kept calling. My Mom was in so much pain. But she was trying. Eventually the doctor made the decision to just send her downstairs. Let that team, take a go at it. So we'd stop tiring her out.

They ordered transport. And we prayed. It also happened that a priest had come by earlier. To pray, bring us communion, and to anoint her. So we prayed some more. I asked various people to pray. And right now, they are downstairs.

But my Mom is so brave. She needs this test to confirm the type of cancer that is present. And so they know how to move forward. I know my Mom was scared. I saw the shaking hands. The silent tears that escaped her eyes. And I heard it in her voice. But when her tech walked in the room, she told her, "Let's do this."

My strong Mom is out there being strong. She's so brave. And she's a fighter. Boy is she a fighter! Please keep her in your prayers. I don't normally document these things on here. But I want you to know, my Mom is brave. And we're going to fight this fight together. 

As a caregiver, I might cry. Like today. In the stairwell. Because my Mom was in so much pain. And trying to be brave. Not asking for meds. I might cry, when the doctor says something. And I'm so grateful we have to wear these masks. That absorb all my silent tears. That I hope I'm hiding...but they're probably falling anyway. 

I've been trying to practice some self care. Even here at the hospital. Sunrise walks around the hospital. Visiting the little bunnies in the garden...2 or 3 times a day. Running up and down 6 flights of stairs...4 times. At least twice a day. Little things. Taking a few minutes to shower. Also allowing myself to feel things as they're happening. Even if I cry in the stairwell. I'm not ashamed. I know this is hard. I know we have a long road. And I know I'm only human. I just hope...I'm half as brave as my Mom. 💜

Sometimes We Crack

To be honest, I thought I was going to meltdown today. The Hospitalist came in. Had a very serious look on his face. And told me to sit down. He had some serious things to talk about. I literally thought I was going to throw up. 

It's hard going through another Cancer Journey. Having the history with my Dad can be good and bad. It prepares us for what's next. But then...we sort of know what's coming next. It's like having Cancer PTSD. Is that a thing? 

So there is this spot on the base of my Mom's head. Where your head sits on your spine. She's going to need a Lumbar Puncture. My Mom is so anxious about everything. And doesn't want to talk about anything. It makes me nervous. And she doesn't seem 100% after yesterday. So I pray everything is going to be OK.

There is still no concrete reason for such a high white blood count. The oncologist and the doctor that performed the bone marrow biopsy both told us her cancer is accelerating. But not active enough to be concerned. But Dr. Iggy gets me all nervous.

Tells me it's the cancer. And there is probably a lymphoma along with her 2 leukemias. Her brain bleed looks to be improving. As do her kidneys. But there is just so much. And then I look across the courtyard...and remember it hasn't yet been 2 years...since she almost died. Here. In the ICU.

I know how precious life is. I've watched my Dad as he crossed over. I've watched my Mom fight...for nearly 5 years now. I know...anything can happen. But it's a lot to bare. All by myself. Especially when my Mom's anxiety was so high. The MRI here...just totally struck something in her. And last night was so rough. Her anxiety after Dr. Iggy's visit got worse. And the anticipation of another test...has her near the edge.

Her oncologist came to visit her. He calmly explains the lumbar puncture to her. Tries to reassure her. He gets down to her level. To really talk to her. Look her in the eyes. It's so reassuring to her. It calms me down. Because I know he really does care.

After he left, my Mom was doing a bit better. But still super anxious. Then the nurse and I tried to get her to lay on her side. Trying to get her to her stomach. The nerves got worse. Her pain got worse. Dr. Iggy said she had to have this test. Emotions were high.

I told the nurse I was going to the bathroom. In reality, I sat in the stairwell and cried. And that's OK. Sometimes you have to let the feelings out. You need to just feel what is going on. I like to do it away from my Mom. So she doesn't see when I'm struggling. I want her to lean on me.

It's just been an emotional day. Soon we'll try again. And see if she can get on her belly. For the 30 minutes they'll need her to. She is so strong. I know she can do it. And because I know she can do it...I know I can remain strong for her. Because honestly, she doesn't really have anyone else to lean on. So I have to be strong. 💜

Grateful

I can't think of any other word. Grateful just seems appropriate. We had the BEST tech yesterday. She went over and beyond. Changed all the bedding. Helped me shower my Mom. Got me linens. So I could shower. Even made sure no one came to our room...so I didn't have to rush in the shower. Made sure I had everything I needed to nap. 

Renee checked on us all day. Emptied the hat...because they've been monitoring my Mom's output. She brought fresh ice water every couple of hours. Took the food trays promptly. Emptied the trash. And when my Mom started to be really nauseous...she tried everything to help her and calm her.

Last night we got another really good tech. And an outstanding nurse. I stay at the hospital at night...to help as much as possible. Because I personally know both sides. And if I can help take my Mom to the restroom, make her comfortable, or help her eat...why not? It frees everyone else up...for the patients that need more care.

But our nurse last night...was on it! She didn't let the IV pump beep more than twice before she was in the room. She stayed ahead of my Mom's pain. Was so super quiet and attentive. After 1AM....she was the one taking my Mom to the bathroom. So I could rest.

This morning we found out...they were short staff last night. But you would have never known. She was so good at her job. And going over and above. My heart was so grateful. She didn't make my Mom feel bad...because she needed pain meds. Or wanted jello at 3AM. Or when she asked for new socks. Jessica was so happy to help.

Today we have 2 other amazing people. Shawn was a tech 7 years ago when my Dad was in the hospital. He is so good! I learned so many tricks from him. On how to take care of my Dad. Things that made it easier for both my Dad and I. He's a great guy. And our nurse Megan...she seems amazing! Came in with the best attitude. 

I'm so grateful when you get people like this on your team. Honestly all day yesterday, we felt like they were trying to throw us out. The Hospitalist wanted to know why the nephrologist wouldn't OK the MRI. Because it's the only thing keeping us here. And apparently, they need the bed. It seemed as though there was a bit of a difference of opinion going on. But Christine doesn't back down to anyone. She has been a great addition to our team. Whenever I'm feeling uncertain about something...I ALWAYS ask Christine. I really value her opinion. 

Today I am just grateful for these amazing people. Along with my Mom's oncologist, her physical therapists, and the cardiac team. They take the edge off of things. Like I don't have to second guess what's going on. We've had them on our team for so long. We've been through so much. It just feels right. I can breathe and let them do their jobs. I can take a few days, to just be. To be attentive to my Mom's needs. And not be worrying about her care. I'm so grateful for these people, that God has put on our path. 💜