He Must Think I'm Crazy...

Do you want to hear a funny story? As caregivers we do a lot for our loved ones. Some days are hectic and stressful. It's usually the day that our loved one, has some sort of doctor's appointment. Anyone else?

Like every other morning, I got up early. It's still dark outside early. Changed into some workout clothes. And headed to the trail for a run. I've recently found running again. It was a solid staple in my life before caregiving. But I've needed some stress relief lately. I'd started running in the summer. And it quickly became a great habit. Only to be sidelined when I got shingles this fall. So here I am. Running on the riverbank at the crack of dawn. Well before my Mom gets up in the morning. 

I came back all gross and sweaty. But feeling great. Don't you love physical activity? Then I tried to wakeup my Mom. Who had an early appointment with her Oncologist. I say early. But it was scheduled for 9AM. And it was a telemedicine appointment. Honestly, those stress me out more than normal appointments. Because so much can go wrong. It was still technically early for my Mom. So I knew it would be a bit challenging.

My Mom didn't want to wake up. I still had to get her showered, dressed, and fed. I needed to feed the dogs. And send them outside. Which would still cause dramatics. Because they don't realize they're dogs. And if I keep them inside, they'll do nothing but bark when they hear the doctor. Because my Mom's dog HATES men! 

I know this out of experience. Because she tried to attack the phone. Once while we were having an appointment with a cardio fellow. Then I couldn't get her outside. So we ended the call. I got her outside. And the doctor had to call us back. Never again folks. Those 2 will have to go outside. 

Isn't it bad enough that we don't have WIFI at home. So we use my phone. Instead of a tablet or laptop. And my Mom can't hold it. Because of her broken arm. So I have to set something up. To have the phone high enough to see her face. Loud enough for me to hear. So I know what is going on. If I have to make appointments, take her for a test, etc. 

We finally make it through a shower. I'm now drenched. Anyone who has ever had to wear a wet sports bra...knows it took forever to maneuver out of that. So I throw on my nightgown. Clip my hair up. Get my Mom dressed. Comb her hair. And provide her with Huevos Mexicanos, coffee, and a tortilla. I'm a total wreck. Trying to feed the dogs. My Mom's dog...of course is fighting me. Won't eat. But won't leave her food. 2 minutes until appointment time...I'm praying the doctor is running late. Because I have one dog sitting on my Mom's lap, another ready to bite me. And my Mom hasn't eaten much.

I'm literally sweating. And then we get the call before the appointment. From the office. 5 minutes. OMG! Someone come and rescue me. I manage to get my dog outside. And now my Mom is fighting with her dog. As I attempt to bribe her. She's finally heading out the door. And either her or my Mom, drops my Mom's coffee and my phone. No time for this...

I get the dog outside. I'm cleaning up the coffee. Making a new cup. Trying to get my Mom to eat more breakfast before her appointment. Or she won't eat. Because it will be cold. And she remembers she hasn't had her morning meds. Me silently praying the doctor has to take a break or something before calling us.

She's taking her pills, and we get the text to start the appointment. I'm in a full on sweat. My heart is racing. And my Mom now wants me to sit next to her for the appointment. Um, I have a face mask on. That I should have rinsed off about 45 minutes ago. In my nightgown...a bit of TMI here. But I'm being real. No bra. My hair in a hot mess on top of my head. No thanks Mom. Let me just set this up for you and I'll be on the other side of the phone. 

I'm pretty sure the doctor may have gotten an unexpected look at something. As I was trying to make the stupid connection work. Then they got to chatting. And I got to prepping a chicken for the dogs. And one for our dinner. Whole chickens. 

The two of them are chatting away. I don't really know what about. As I now have my hands up the backside of a chicken. Stuffing it with oranges and herbs. When I hear, "Where is Desiree?" And I see my Mom reach for the phone. My panic stricken face. I think she thought twice. I know what she was going to do. Whip the phone around so I could say Hello.

And it happened to be one of those appointments when he needed to chat to us both. I was listening to the plan. My Mom was asking questions. I'm also covered in chicken juices. As I'm trying to finish what I'm doing. And not make any noise by going to wash my hands. I also can't leave the kitchen...because I might miss something from the appointment. 

I think the doctor realized these are probably not the best sort of appointments for us. My Mom has had a couple with him. But at the end of this appointment...he told her, "I'll see you in the office from now on." Thank goodness! Because she'll get up earlier then. And we have to physically be somewhere else. So I don't have to fight with her. And the dogs. And well, I'll have my bra on. So I can talk to the doctor. 

I know. That sounded weird. But it was a weird day. As they were saying their goodbyes, I ran to wash my hands. Hoping my Mom wouldn't pick up the phone. But who knows. When I got back, she was still connected to the call. Maybe he got a look at my 2 chickens. In their pans. On the counter. Or the stack of folded laundry on the chair next to the couch where my Mom was. Maybe even...the box of Christmas decorations. Because I had literally just taken down the Christmas tree. Before I went on my run.

Not all the telemedicine appointments are so crazy. OK, about a year ago, I bought a new phone. Because of the telemed appointments. Got home. My Mom was having an appointment with rheumatology. The phone would not work. We missed the appointment. Just my luck. Every appointment with cardiology has gone smoothly. Since the dog incident. And I actually sit in with my Mom. Because I usually have to take her vitals for them. But for whatever reason...Oncology and these appointments don't sit well for us. Last January, my Mom also had one. In which she dropped my phone into the Christmas Tree. I just don't know. Just glad it's over. This man also probably thinks I'm a nut!

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.