Trying to Find My Way Back

When I first entered the HealthCare arena...as a working professional, I was 20 years old. I lived and went to school in a community that was underserved. And depended greatly on the college students. Who at the time, worked in our local healthcare system, and held 80% of those jobs. The thing is, my college has this amazing nursing program. And the Nutrition Program is also greatly sought after. A little hidden gem if I'm being honest. 

So weeks into switching my major, I was working at my local Department of Health Office. About 2 months in, I was in the ICU of our local hospital. It was all very quick. But then again, I was a quick study. My professors and the doctors I worked under, felt like I could handle it all.

I spent a solid 10 years working. In hospitals. In clinics. Doing research studies for the Universities I attended. Eventually, I became a contractor for the Hospital System my family uses. And when I made that leap, to move home and take care of my aging parents, I slowly slipped away from work.

Maybe I was naive. I thought after my Mom's services, I'd be back to work. Maybe take the Summer off. And then jump head first. What I didn't anticipate was the mental unpreparedness. 

For the first couple of years, after I moved to take care of my Dad, I had continued to work. When and where I could. I was a contractor where he received care. So I'd fill the gaps where I could. Mostly working at the Main Hospital. On weekends, I'd drive 4 hours to return to the Children's Hospital where I worked. During the week, I'd check into our local hospital when I could. I also had a pretty flexible position within our state's Department of Health.

Eventually my Dad's health got to be so bad, that I had to stop working. His care, basically became 24/7/365. We couldn't trust him to drive. He was being hospitalized more and more often. Falls were so common, the local Fire House knew us personally. Things were just spiraling downward. And when my Mom could step in to help...it usually left me doing something for their business. So work was on hold. 

After my Dad's death, I struggled. Mostly silently. With grief. I tried to keep everything together. More so for my Mom. She needed me to be strong. I continued to go to a Support Group that we'd attended as a family. In the Cancer Center where my parents received care. I'd visit my Dad's grave daily, while my Mom was at work. She'd returned part time. 5 months after his death. But I knew I was having a tough time. I saw the hard stuff, that no one else saw. I helped my Dad, keep things from my Mom. Like when I actively knew he was dying. And so did he. But he didn't want her to know.

I gave my Mom and I a goal. One year. At one year, I'd start taking the necessary steps to move back to my home. To reclaim my life. And to get back to the career I'd abandoned. I also felt like that was a good amount of time, to attend the Support Group. Not to mention, I was having TeleMed appointments with my therapist 4 hours away.

Something was off with my Mom. I thought it was the grief of losing my Dad. She didn't go to counseling like I did. She didn't even know that I was seeing a therapist. My Mom held tight to her faith. When I brough up moving, my Mom slightly panicked. 

I thought maybe it was because she hadn't really taken care of any finances, since her and my Dad got together. And after his death, I was the one paying the bills. Making sure things stayed on track. But that wasn't it either. Maybe she didn't want to live alone. I mean, we sort of inherited a dog 2 weeks after my Dad died. And when I brought up moving...my Mom instantly fought me for the dog. The dog she didn't want, when my cousin didn't pick her up. The dog that was attached to me. Literally, attached to my side. At all times. So I'd spend 3 months looking in all the City Shelters. To be told, I needed to get a puppy. Or the two dogs would never get along. Long story short, I ended up with a puppy. So technically, neither of us would be alone.

But that wasn't it either. We'd spent that first summer, basically at my Dad's graveside. Daily my Mom wanted to visit him. We'd have lunch there. Take the dog. Sit for hours. Listen to music. Read books. Just talk. About 9 months after his death, my Mom was just not OK. I couldn't put my finger on it. We were fighting a lot. She seemed off. But I didn't know what was really bothering her. 

I let things go for a few more months. I figured we could talk again, around the anniversary of my Dad's death. I thought, I could move in June. Take a few weeks to get things in order. Then I could go work in July. But my Mom wasn't having it. 

I knew she had a long trip planned with my Aunt and Uncle. So instead of going back to work in July, I told my supervisor, I'd go back in December. Why are those the only times when they want you to enter the workforce? It's a hospital thing. So we agreed December. But my Mom got sick that Summer. And was diagnosed with cancer in September. She spent at least 6 months, in excruciating pain. At diagnosis, the Hospitalist told her she could no longer work. Or drive. Basically, if she couldn't drive...she couldn't work. So there I was. Back at square one. Not sure what I should do.

My plans to go to work were thrown out the window. Fast forward a bit. About 6 months after my Mom's diagnosis...she either started to tolerate the pain better. Or maybe it got slightly better. She slowed significantly on her pain meds. And I decided, we needed some income. So I entered the workforce. With the Department of Health (DOH). Previously, I'd worked in their Clinics. Both the basic clinic. And with Women, Infants, and Children. So I took a job with WIC. 

I didn't realize it was going to be so tough. But it was, what it was. I worked online when I could. I'd go into one of our local offices to teach classes. Once a week. But my Mom, she wasn't doing well. She was struggling with basic stuff. The pain got worse. Neither of us had decent doctors. We were still trying to get her Health Insurance.

Eventually, I stopped going in to teach. Because I couldn't leave her. My Mom couldn't pick up a gallon of milk. Or bend to pick up laundry. She couldn't open a bottle of water. So I did the online thing. For a few months. Eventually, it just wasn't working out.

I'd spend the next 4 years, taking care of my Mom. We got into selling at our local Growers' Markets. Selling our crafts. I started helping friends. Who in return would give us veggies, pies, and bread. Whatever they sold. I just tried to help. And was so grateful for the help that they gave us in return. 

At the high point of the pandemic, I started doing TeleMed appointments. Both for the DOH/WIC and the Children's Hospital where I once worked. Technically, I'm on a leave of absence. I took FMLA when my Dad got sick...and then just changed the leave when my Dad's health worsened. 

From time to time, I still help them. Especially during RSV Season. I tried to convince a good friend of mine, to take a Part-Time RD job with them. But she is happily raising her daughters. I worked remotely from May 2020-July 2021. But my Mom was needing more and more help. By July she'd had two falls. And broken her arm multiple times. She know needed help bathing. I needed to do all the household chores. 

So naively, I thought I'd start working 6 months ago. Until my therapist raised the Red Flag of doom. That she didn't believe I was ready for work. Not only the stress. But it's not like I'm going to be behind a desk. Or dealing with numbers. Or cleaning. I'm going to have people's health and lives in my hands. She just didn't feel like I was ready.

In October I applied to volunteer. In the Hospital. It's a 5 minute drive from my home. I figured I could start with one day a week. See how everything goes. But that's not where they needed me. I ended up at the Hospital nearest the Cancer Center. Not with patients. But in the Gift Shop. Huh?

It's been OK. As my OCD has gotten worse, it has been a mixed blessing for the Gift Shop. I've torn it apart. Cleaned. Organized. I've decorated for every Holiday since I've been volunteering. In January, I started volunteering twice a week. When two of the volunteers got into a fight. 

For the last few weeks, I've been here three times a week. Because the other volunteers are struggling to get along. And they've taken some time off. Again, it's not the place where I want to be. I want to be making a real difference. Not staring at the walls. For 2 hours. Then having a big surge...of selling junk food. Then being bored and stocking shelves.

I know the employees value the Gift Shop being open daily. Especially since the cafeteria isn't always open. We're now open daily. For four hours. It's a steady thing. But last week, on my third day of the week being here. I decided to take a look at the Volunteer Listings. There's rarely anything at this location...that is available. Outside of the Gift Shop. So I started to read through all the listings.

I decided that maybe something clerical woud be good. I could do that for a few months. Then maybe move to something with the patients. I found something. Agreed to all the terms. Sent my necessary documents where they needed to go. And I got it. I was quite pleased with myself. Took all of 5 minutes. 

When I got home on Thursday, I decided to read through my emails. And I found the Volunteer email. I didn't realize it was for the Cancer Center. It's a clerical position. I honestly, don't have a clue what my duties are. The listings are pretty vague. Hence, I didn't know it was in the Cancer Center when I applied. 

It starts in May. I knew it was weekly. But I wasn't sure, how long it would be for. Turns out, 5 months. It also conflicts with one of my days in the Gift Shop. I knew that when I applied. But I'm OK with letting that go. Since my goal is to ultimately get back to work. The Gift Shop is not going to help with that. 

I truly hope that I do OK in this position. I'm hoping to also take a minor position at the Main Hospital. Reading to the NICU babies. That would be weekly as well. 4 hours too. I might try to start that one, later this month. Then if everything is going OK, by July, I'd like to talk to my therapist about going back to work again. Those are my goals to reclaiming my career. Little by little. 

Thank You!

It's not been the best week. Monday I had a big mix up with the pharmacy. I had a very emotional appointment at the OB/GYN. Why is the entire place covered in posters of babies? The hallways. The exam rooms. The checkout desks.

For someone like me...who's always wanted kids. It's hard. Just to go there. I was there for a shot and a checkup. To see if all the hormones are helping get my body back into a cycle. And I cried. Meltdown type of crying. I held it together in the waiting room. In fact, I gave one mom some breastfeeding tips. My years of working at WIC sometimes come in handy. 

But going into the exam room. It all just came out. And I cried so hard. The poor nurse. She was new to me. Because my midwife retired. And I'm now being floated between anyone who can see me. 

I'm also at a hormone peak. So I'm sure that doesn't help. Apparently my peak ovulation day was Tuesday. And my new midwife tells me, "Go home and get busy. You're not too old to be a momma." The tears silently soaked the inside of my mask. 

I almost wanted to ask...you got any single guys around here? Good ones. Not the creeps that keep sending me DMs on Instagram. Or the ones who scream cat calls at me when I'm running. Or the lazy ones who are looking for a Sugar Momma. But a good man. To not just make babies with. But to share my life with.

I kept my mouth shut. Let her do her exam. And ultrasound. Had my shot and left. The pharmacy messed up my Flu Shot appointment. And I had the world's toughest counseling session yet. I basically spent 2 hours in the fetal position crying. Childhood trauma is tough. Especially since I've never talked about these things before. To anyone. 

I was determined to make Tuesday better. Left my house early...but somehow still had to run 2 miles to Walgreens. Because I was somehow late to my appointment. Afterward I decided to take a stroll around our Old Town. And was devastated when the chain to my Mom's necklace broke. And I lost her cross. 

I spent hours retracing my steps. Crawling on my hands and knees. Going through the grass. Asking tourists if they'd seen it. Talking to shop keepers. Eventually sitting in the grass and crying. And I'm not even a crier. But this means so much to me. It was a symbol of her faith. How much she loved and trusted God. I still can't believe what happened...

Eventually I grabbed something to eat. Called my cousin and my Auntie. Because I needed to make sure they could help me next week. I'm having a colonoscopy and endoscope. And need to arrange my rides. Then...I talked to GI for a bit. 

Yesterday I walked back. Spent more hours searching. Praying. Talking to more strangers. Writing little MIA posters out. And taping them around. Surprisingly enough...many strangers helped me. I'm so very thankful. 

I even met a man who is a Metal Detector enthusiast. He was teaching me all about it. We searched for hours. With no luck. So I returned home after a trip to the grocery store.

Over 3 miles from the grocery store to my home.  Carrying pounds of fruit home. I was so tired. Emotionally spent. But I decided to work on one of my Mom's last requests. Thank You baskets for her Medical Team. 

I should have gotten better pictures. But I spent the entire night baking cookies. Then had an early Counseling session today. Another appointment. And a job interview. So I snapped this in the back of my Auntie's truck. Right before I started delivering them.

You know what? It made me feel so good! I showed up to Radiation first. I purposely went around lunchtime. Thinking...the offices will be much quieter. Less chance of running into someone I might know. Is that weird? I just didn't want to lose it...in a full office. Especially coming from a job interview. More on that later.

The receptionist was so grateful. My Mom never needed radiation. But I spent so much time there with my Dad. We did use other services in that office. Mostly the Dietitian. So I wrote a little card. And dropped off the basket. Happily accepted a hug. And went on my way.

I went next door. I mean I probably looked hilarious! Pencil skirt and stilettos. Carrying a gift bag bigger than myself. A smaller bag. 2 large buckets of snacks. And a gallon sized bag full of pills. This is my 3rd drop off of meds. How did we accumulate so many?

I didn't see anyone that I knew. Not the guy who usually greets us at the door. And checks our temperature. Not nurse Jackie. Or my Mom's MA Orly. I didn't run into her Oncologist. Or even see Melissa the clerk. 

I managed to get into an elevator. Prayed I wouldn't drop anything, fall down, or see anyone I know. Emotionally I wasn't sure I could handle it. I snuck by check in desks and made it to the checkout desks.

Only one person was working. I had never seen her before. So I had a seat. Covered in things. While the clerk helped setup appointments for a patient. And I kept thinking to myself...I'd like to work here one day. To be helpful to people. To be in this environment...were you make such a difference.

I was also silently praying...that my Mom's MA or Oncologist wouldn't wonder through the door. Maybe coming back from lunch. Or between patients. Because I knew I would burst into tears. And I wasn't sure that was the best for any of us.

After 30 minutes. Nearly having a heart attack because another oncologist, Dr. R walked 2 of his patients out during that time. And looking up how long the average oncologist goes to school for...Angela came to chat with me. 

She Thanked me a million times. Hugged me. Asked about my parents. Which got the tears rolling. Who am I? I've never cried this much in my entire life! But she listened to my story. And I just kept thinking...oh God help me get through this. Help me not completely lose it here.

Eventually I asked her about some other items I was needing to dispose of. A box of sharps. Liquid meds. A few narcotics. She disappeared into the back again. My anxiety started to get out of control. All of this is so new to me. But I tried to stay calm.

Eventually she came back with some answers. And a nurse. And more hugs. I was so happy to make a positive impact on them. Give them a little bit...of what this office gave my parents and I for 9 years.

I'm only sad about one thing. I came home this evening. Tried a cookie that I baked. And was not happy with them. At midnight they were soft and gooey. The chocolate chip cookies were so chewy. At 5PM...they'd gone a bit crunchy. Maybe I'll bake for the office again at Christmas time. 

I left there feeling lighter. One I'd accomplished something off my Mom's list. Half the Thank You baskets. In 2015...we cooked a feast for the office. In 2022...I baked 10 dozen cookies. And put together baskets that weighed a ton! I mean they still appreciated it. But I felt like I could have done better. 

I also dropped off a very important gift. My Mom had been making Dr. N. As much anxiety as I was feeling waiting in the office. I sort of wanted to see him open it up. Wanted to see his expression. Just because I know my Mom worked so hard on it. But I didn't see him. Or Orly. Maybe this is just where our stories end.

I left there and headed to Nephrology. Again...silently prayed that I wouldn't run into Christine. I'd love to see her. But wasn't sure having a complete meltdown in the waiting room was the best. The receptionist and MA were so grateful. Hugged me. And gave me their condolences as well. 

When I was walking out the door, I could hear them telling Dr. E about my Mom. And I nearly sprinted in my stilettos across the parking lot. And cried in the truck. I saw him walk out the door. And have never been so grateful for a work truck in my life! Who was blocking me from his view.

I got a lot of closure today. And peace. I had a good interview. I was offered a nice job. But it includes a lot of commuting out of town. Which I'm just not sure of right now. But it was a HUGE boost to my confidence.

But back to those baskets. It wasn't a ton. A few drinks. Some fruit. Candy. Those homemade cookies. And a bunch of snacks. I wish I could have done more. Sent them something amazing. But right now...it's what I can afford. I still need to make my way to Cardiology. And the hospital. I'd like to take 2 sets of baskets to Oncology and the ICU. Day and Night Shift.

I can't begin to express how grateful I am to all of these people. They made our journeys so much easier. All the doctors, nurses, MAs, NPs, receptionists, clerks, FA advisors. All of them. The cleaning crews. Everyone was so wonderful. 

After today...I'm really considering going all out at Christmas time. I love to bake! But have no one to bake or cook for anymore. And this is just a small way to show my appreciation. Because I swear to you...the people who work in Oncology are angels on Earth. 💜

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. 💜

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. 💜

It's a New Day, It's a New Dawn

 Today we woke up very differently than normal. Maybe our new normal? Either way it seems so unreal.

My Mom's cancer has made a fast progression. And all at once she's had another medical emergency. It quite honestly worries me to the core. I didn't want to leave her last night. But with corona virus, being at a hospital so far from home, and having dogs...I headed home late last night. Got the dogs fed. And prepared for a day or 2 without us. Watered the garden at midnight. And prepared some supplies for us.

I should have been back sooner this morning. But exhaustion kicked my butt. The dogs didn't want me to leave. I almost didn't make the trash today. I woke up to hear the truck driving by. But our trashman is super nice. And came back for ours. I even got the recycables set out for tomorrow.

We still got plenty of visits. From plenty of doctors. Tomorrow My Mom's oncologist will be here first thing tomorrow morning. To discuss chemo. Chemo! The thought gives me so many feelings. It's been nearly 5 years since my Mom's diagnosis. But I didn't think chemo was this close. Because the leukemia had been stable. Stable!

My Mom spoke with the director of oncology this morning. And the dietitian. I spoke with her hospitalist, nephrologist, the oncologist, another hospitalist, and the team who will be doing another bone marrow biopsy. So much is happening! We even had a visit from a Eucharistic Minister who prayed over my Mom. And gave us eucharist. 

First thing in the morning, my Mom will have a bone marrow biopsy. And if her kidneys are doing better, which they've greatly improved already, she'll have another MRI with contrast. If not, she'll have a CAT scan. Potentially there will also be a bone density scan. 

It's so hard being that the weekend is near. So do they start chemo in the hospital? Do they send us home? What tests can they do in the hospital? Lots of things. We do know, she won't be discharged before Sunday. Honestly, I feel like we'll be here until early next week.

Great things are already happening. Like my Mom's blood chemistry is improving. Her kidneys are working great. Just needed some help with meds. Now we just try and get her to eat. That's the big thing. Eat Momma, Eat!

It feels almost like my Dad's journey. Because it goes from nothing...to full force. And you're left with your head spinning. But we're making a plan. And have some amazing doctors on our team, #TeamIrene Most importantly I have full confidence in our doctors. 💜

Again...

 You guys...we're back. In the ER. I know. I went to make some dinner. So I could watch #TeenMom. My one show a week. And I heard this little noise. It was my Mom. She barely made any sound. But she fell on her way from the bathroom to sitting on the couch. 

I'm so sad for her. She was immediately in pain. I was able to get her up, the dogs situated, and to the ER...before an ambulance would have made it to our home. But you guys, she fell on her right side. The side were she already has a broken arm. I have a feeling she broke something else. But thankful it wasn't her leg or something like that. 

I have to say, things are moving quickly. We didn't spend much time in the Waiting Room. My Mom was almost immediately taken to X-rays. She's had a CAT scan. And now, we're in a room in the ER. What a night! 💜

Love Caregivers 💜

Hi guys! My name is Desiree. And I'm a caregiver. It's been a full time job...for nearly 10 years. First, I cared for my Dad. Until his passing in 2015. It was over 5 years of the toughest times in my life. But I would not change that time...even if I could. To be with him, when he needed me the most...was life changing.

In 2016, my Mom was diagnosed with cancer as well. And instead of heading home like planned...I stayed to take care of my Mom too. Some would think, this time around would be easier. But it hasn't been. There are plenty of challenges, that I face on a daily occurrence. I have more knowledge of how the system works, what to expect, and how to navigate through it all. But it's just as challenging.

I started the Love Caregivers part of our foundation, in 2015. When we began our foundation. I knew from experience...just how difficult and lonely it is to be a caregiver.

Caregiver: A caregiver or informal caregiver is an unpaid and without formal training, member of a person's social network who helps them with activities of daily living. Caregiving is most commonly used to address impairments related to old age, disability, a disease, or a mental disorder.

By definition, you know it's going to be tough. But I don't think anyone REALLY knows how difficult the journey is going to be. I know I didn't. At all! Even though, we helped take care of plenty of relatives before.

As part of the Love Caregivers movement, for the past 5 years I've been sending out cards, care packages, and giftcards...to caregivers and children of sick families. I began my work, in my Dad's hospital room. After years of connecting, with other caregivers.

I knew firsthand, how tough long stays in the hospital could be. How lonely, the long weeks at home would become. And how not many people, really understood what I was going through.

During my Dad's last year of life, we joined a Support Group. At our Cancer Center. It was life changing! And I'd strongly suggest, you to do the same. Once a week, we'd meet at the Cancer Center. My Dad was never too thrilled. But immediately following his diagnosis, we were asked to attend. The doctors in our Cancer Center really know, how to take care of the entire family.

My Dad, Mom, and I would go. His doctor noticed his resistance. And immediately started scheduling his appointments, to coincide with the Support Group. The meetings were about 2 hours long. They provided lunch. Only patients and their caregivers were allowed.

And it was a completely safe place. To discuss everything. From diagnosis, to treatment, to end of life care. Patients could talk to each other about what they were going through. Caregivers could support one another. And all of our team (doctors, nurses, PT, PT, psychologists, therapists, financial representatives, insurance people, etc.) would attend. Each week, one of them would lead a small discussion.

It was a life changing experience. There is no other way to put it. These people, became my safety net. And after my Dad's death, I still attended for a few months. They supported me through my grief. And I was a wealth of knowledge...for people on this journey. While my Mom worked, I would go to the meetings. It saved my life. And me from having a breakdown.

With all of this, I realized the need for a safe space. To talk. To go to for answers. To be supportive. That's where this space was born from. I started on Facebook. And chatted with people through email. But I see the need for this space.

In 2020, I want to blog more often. Talk about the topics and questions, that I receive. I feel like, so many families are looking for answers. And I can give you, some of the things I've learned along the way. The tough stuff. The financial stuff. The emotional stuff.

If you have questions, please feel free to leave me a comment, send me an email, or reach out to me on social media. I want to be part of your safety net. And I'm here to tell you, whatever your journey is...you will get through it. There might be bumps in the road...but you will make it. 💜