They Want Him to Look at What?!?!?!

About 2 weeks ago, I started to not feel well. I didn't know what was wrong. I actually called my Doctor's office. To see if I could go in. And I got the whole..."If it's not an emergency, go to Urgent Care. If it's an emergency go to the ER." On my Sunday hike with my dog, I fell asleep on a bench. On the river trail. I barely made it home. Something was wrong. 

Then I woke up over a week ago, and I just knew it. I had shingles. I went to an Urgent Care/ER. And sure enough. Got diagnosed. Immediately called the Cancer Center. Talked with Nurse A. Then panicked. All while waiting in line at Walgreen's for my prescriptions.

Not only is my Mom on chemo. She's never had the chicken pox. We needed to be separated immediately. And I had no other place to go. Or anyone to watch my Mom. After about 2 hours, my Aunt agreed to take her. 

It's been crazy! Over a week now. The initial blisters were healing. And then I got a second outbreak. I called my PCP immediately. Got the run around about not having any available appointments. We've gone to him since 2012? I've only seen one other patient in his office. Ever! Demanded to talk to him. And he told me to go to the ER. 

I called the Cancer Center. Again! Talked to Nurse A again. She told me she'd call the prescribing physician to get another round of meds. Gave me an entire list of things to watch for. She panicked when I told her they were crossing the midline. "Can you come into the office? In an hour. I can fit you into see Dr. N. He can take a look and see if you need to do anything else." She wanted me to go in. Because she knows about my PCP. Same as my Mom's. And she didn't want me to wait at the ER. 

She gave me all these instructions about getting there. Calling the office. And someone would meet me. Because they didn't want me around the oncology patients. I cried like a big baby. Told her I didn't want to go in. I thought I'd be OK. Honestly the next 24-48 hours were the worst. The pain. I had a fever. I slept most of the time. I set a timer, so I would take my meds. I didn't eat. Forced myself to drink 2 glasses of water every time I took my meds. I couldn't wear clothes...because it hurt so bad. And they were coming so close to crossing over...

Fast forward a few days. And things are healing. I was told I needed to be cleared by a physician. To be able to take care of my Mom again. So I call Nurse A again. And she gives me the same instructions. And I burst into tears. 

"What's wrong honey? He's a good doctor. Don't worry."

"Nurse A, they're from my armpit all the way around my breast. To the middle of my body. I still can't wear a bra. If he examines me now. How am I supposed to have serious conversations about my Mom later. I know I sound like a prude. And he probably won't care. Heck, I don't care if a male nurse or another male doctor examines me. But Dr. N. I can't. I'll just go to Urgent Care."

"Honey, it's OK. He's a professional."

"But I can't Nurse A. I CAN'T. I know you are trying to help me. But I swear to you...it's all I'll think about."

"I respect that. Let me find someone else."

Meanwhile, I'm thinking I'm crazy! He is a professional. Imagine how many breasts he's seen. Whether at work...or otherwise. But it was just too much for me. In the past, when I've had back issues. I could careless if it was a man or woman who was helping with X-rays. One time, I physically couldn't undress myself. And asked the male tech to help me. I didn't care. But this is different...

When it's someone you know. And will see again. Many times. Whom you have great respect for. It's a bit different. Maybe I am just a prude. Eventually I got examined and cleared. I picked up my Mom on my way home. Never been so happy to see her! And all is well. Dr. N didn't have to see my shingled breast.

In case anyone is wondering. I'm still in my 30s. Not eligible for the Shingles Vaccine. I was also told, stress brought about this outbreak. So my fellow caregivers. Please try to not be too stressed out. I've dealt with a lot in my life. But darn. Shingles was painful! And I basically couldn't function for 2 weeks. So if you can get the vaccination...please do!

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. 💜

Love Yourself

This week more than any other week, has made me realize how important self-care is. It's more than a slogan or silly catch phrase. It is what will carry you through your journey. Over the long haul.

This is my second time being a full time caregiver. Basically I've been at this since December 2010. Before that...it wasn't full time. But still an active part of my life. I know there are a ton of tough days. There are lots of days when we struggle as caregivers. Lots of days, when I know we'll be tired from doctor's appointments, hospital stays, and treatment days. I know this. I've walked this journey before.

I also know, lots of people will offer support. But when you get down to it...it will just be me. These are the days, when I truly hate that I never found a life partner. Like why couldn't I have found a husband or at least a boyfriend somewhere? At sometime...in this journey. To help shoulder some of this? But I'm here. And I have to do the best I can. 

From experience I need to give myself grace. And know that some days, I might not cook every meal. Or the laundry might pile up. I might not get to mop the floor. Because my Mom's needs are more immediate. Or that I just don't get to the grocery store. I know there will be days that showering her is more important than bathing the dogs. Or even myself. 

I've been here. Walked this journey before. I know there will be days when yardwork isn't done. When we go to appointments, and I've barely managed to brush my teeth and wash my face. I know there will be those days, when I just want to cry. I've been there. I've lived that.

But I also know, I need to take care of myself. I need to stop and say, I need 5 minutes too. Here at the hospital, I've made sure to take a few minutes each morning. I ask for a towel and a washcloth. And I go shower. Change my clothes. That is for me. I can cry. I can take care of my needs. Most of all, it's 5 minutes of just quiet.

People always ask me, how do you find time to practice self care in the hospital? I find at sunrise, my Mom is super tired. They wake her around 3AM for blood draws. Between 4 and 5AM, they check her vitals and she goes to the restroom. So I sneak out for 30 minutes or so. Walk around the hospital. Take my phone to capture the sunrise, any animals I see, and the beautiful plants. Just being outside, fuels my soul. 

During the day, I try my hardest to leave the room 2-3 times. It's usually for 10-15 minutes. It may sound crazy, but I run up and down the 6 flights of stairs in the building we're in. It started as a coping mechanism when my Dad was in the hospital. We were usually on the 5th floor. I'd run up 2 flights, and down 9. Until I couldn't breathe. Now we're at the sister hospital. And there's only 6 flights. So I run 4 times. Top to bottom. I do that twice a day. I find it helps with the nerves. And any weird feelings. 

A normal person would probably walk down the stairs for whatever errands they need to run. Going to the bathroom, cafeteria, or leaving the hospital. My friend Jessica does this. Then she uses the elevator to go back up. A little bit of exercise...because we spend a lot of time...well, taking care of someone else. 

I also make it a point to eat one good meal. every single day. Whether it's lunch in the hospital. I really enjoy a good hospital meal. Or picking something up between quick visits home. In fact the other day, I bought a big salad and a sandwich. Because we have a refrigerator in the room...it turned into 5 meals. I keep healthy snacks on hand too. Bottles of water. And also one treat on hand. For me, that's a dark chocolate bar.

As caregivers, we forget to love ourselves. We forget to take care of ourselves. We forget that we need time for ourselves too. Even someone like me. Who is doing this alone. You just need to make time for yourself. 5 minutes is enough to fuel the tank. And sometimes, honestly, 5 minutes of peace and quiet is all you need. Taking care of yourself, will only make you a better caregiver. I repeat that...Taking care of you, will make you a better caregiver for them. 💜

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. 💜

Hospital Life Lately...

Where do I start? This hospitalization has been so challenging. It's the first time my Mom is an actual Oncology patient in the Oncology Unit. That has made it a bit easier. If you've spent a significant time in the hospital...you will understand. My Dad spent so much time in the hospital. And anytime we weren't in oncology...it was the worst! 

With my Mom, she has been in normal units. As well as ICU and the CCU. Normal or stepdown units are horrible! So I'm relieved to be here. In this space. With caring people. Knowing we will see her doctor every day. And ironically, we're here. During his hospital rotation. Makes things easier. And my Mom isn't fighting to go home. Because she trusts her doctor. Heck, even Dr. I has been nice this time around. 

But my Mom has had a number of procedures. New and old. It takes me roughly an hour to get home. So I can feed the dogs and clean up after them. Another hour back. I quick trip home...is usually 3+ hours. And my Mom hates for me to leave her. So it's tough. And she can't have any other visitors because of COVID-19 restrictions. I've tried leaving enough food and water...so I only go home every 2-3 days. 

The challenging part for me. Has been trying to get my timing right. The doctors don't round at a set time any longer. Did COVID-19 change things? I've been going on runs, early in the morning. I found a nice trail near the hospital. But then, I don't know when to shower. Because the nurse and the techs have different shift changes. And they like to hear from me during that time. So basically I just sit here for 2 hours. Then I'm trying to beat the doctors. The Oncologist and the Hospitalist come at completely different hours. The nephrologist also comes by. 

Since I've been running...I don't want to smell. But at the same time, when do I race in for my 5 minute shower? Every day I've been caught by one doctor or nurse. I'm usually in the shower. Today, I'd just gotten out. And was about to get dressed. My naked body right next to the glass door. When I'm in the shower...I will figure out a way to get dressed in there. But, well...

At the Main Hospital I wouldn't care. They have real doors. Here everything is glass. I mean it's a frosted glass door separating the room and the bathroom. I hope Dr. N didn't see anything. But who knows. At this point, I'm just happy to be clean. And that my Mom is improving. But really. Why was he so early today? Hopefully he was busy doing doctor things and didn't notice me fighting to get dressed in that small space.

I dressed as fast as possible when I heard him talking. And I came out to see him kneeling to talk with my Mom. Soaking hair. No socks on. But at least I was dressed. Maybe we get to go home this week? Hopefully. Because I doubt Dr. N will be here much longer. And my Mom isn't going to want to stay past that point. I'm just saying.

On top of all of this. I'm pretty sure he saw my underwear last week. I was getting ready to take a shower, when he came to see my Mom. With the NP. I was trying to help her with something. And he went to the bathroom to get something for us. Ya, all my stuff was sitting on the sink. Just life in the hospital. I guess. I'm ready to go home and peacefully shower. Maybe cook a meal.

If we're here much longer. I'm going to have to get a better schedule. When my Mom was in the ICU almost 2 years ago. Dr. P and I came up with a schedule. When he'd get here in the morning...at 4AM. He'd sit outside the room. So I could have 10 uninterrupted minutes. He wasn't letting anyone in the room, unless my Mom was having an emergency. I greatly appreciated that. We were also in the hospital for almost 6 weeks? 

I don't ask for much when I tag along with my Mom. I want her to get the best care. And as long as I can take a 5 minute shower and brush my teeth...I'm a happy lady. Total bonus if I can get decent food. At this particular location...the cafeteria is horrible. And I'm afraid to leave before lunch time. So I'm just eating dinner. By now, you'd think I'd buy myself some snacks to hide in the closet. Your girl is living on iced tea...and dinner. But I can benefit from dropping a few pounds. 

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. 💜

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! 💜