Enhertu - 1st Infusion

Today was a really long day!! I left home at 7am for a bone and CT scan which takes forever as the radioactive injection needs to sit for 3 hours. These were scans to establish a baseline to see how I look in 6 weeks.

Then it was off to the infusion center. Things went slowly, but smoothly so I can’t complain. Next time should be a lot faster.

And, now I wait… 

Sleep

I really can’t complain about a solid 6 hours of sleep, correct? But, I am. 

I lay down at 10pm and sleep right away which is great considering I’m still on steroids. I’m able to sleep in 2 positions: on my back with my knees propped it on my right side with a pillow between my knees. And, I’m good for 6 whole hours. And then it is 4am which is way too early to be awake for the day. I’m wide awake!!

What do I do? I lay here picturing the hikes of last fall and before hoping to drift back off, but no. I think about what I’d like my next hike to be… hopefully a short, flat one-miler in October. Leaves crunching under my feet with sun shinning through the trees…

This morning is worse as I’m in a hotel so I really don’t want to disturb Dan and Ryan who are not suffering this same fate. Then I think about Tyler, hopefully sleeping through the night in his dorm for the first time. I’m fairly confident he’s fine. I’ve even checked the camera on Lucy in her luxury kennel and she’s sleeping away. It’s just me here in the dark left to my own thoughts.

So, I remind myself that I’ve slept 6 solid hours. I can lay here a few more thinking about all the blessings in my life as I listen to those I love most slumber around me. 

Home

I’ve been home a full week and am improving daily. Basic things still take a lot out of me, but I love being able to do them. Making dinner on Tuesday felt good. Since then we’ve been making the rounds of Tyler’s favorite spots so no cooking, but I’ll be back at it next week. I actually went down into the basement yesterday to restart the dryer. Woot woot!

The new chemo is scheduled to start on Tuesday and I’m full of hope that this is my key. I only need one thing to work, right? We picked up the nausea meds last night so bring it on!

Ty should be ready to go by the end of the day today. It is going to be so weird. And good for him. I’m so happy he’s going somewhere that he already has a network of friends and support. He’s smiling and ready even if mom isn’t quite there yet. I’m looking forward to hearing about his adventures. Maybe he’ll throw us a pic once in a while…with teeth. I know he’s ready.

Ryan is our social butterfly. Cars are pulling in the driveway daily to take him somewhere fun. Today is golfing. I’m anticipating a more typical high school experience for him with lots of football game attendance, dances and general good times. I’m looking forward to those smiles too. He’ll miss Tyler and I hope we find ways to keep them connected. 

Change is life and we’re rolling with it. Enjoy all those minutes as they are short. 

The Plan

Things have been a bit crazy since I got home from the hospital. But, I’d say improving.

I saw the surgeon yesterday who confirmed that all looks good and he removed my staples. I had an X-ray of my hip down to my ankle and all is as expected. Yay!! I’m still in significant pain, but that should ease as time moves on and I have hopes of walking without a device in another 4 weeks. I have to remember that surgery was just 2 weeks ago tomorrow. Slow and steady wins the race.

Today Dan and I met with my oncologist and we’re moving on to my 3rd line of treatment which will be Enhertu. It is a chemo that is every 3 weeks, starting next week. It is known to cause nausea issues, but the team is taking steps to avoid that plus I’m not generally a ‘puker’ so let’s hope that holds true with this treatment. I need to have a baseline echo and CT scan before I can get started. It worries me that I haven’t had chemo in 4 weeks, but I have to trust the process.

In the meantime, we’re dropping Tyler at school this weekend so I’m hoping to enjoy some time where I’m not sick from chemo. Maybe a nice pizza or other treat aimed at gaining some of my weight back. My left leg is really skinny!! I guess that’s what happens when you don’t use it for a significant period of time, but it better get with the program as I have things I want to do and see before the snow flies!! Time to squeeze in a little summer fun.

Keep the prayers and positive vibes coming. I can feel it and appreciate all the support.

Home

I arrived at home yesterday at 3pm after 10 nights/11 days. I  incredibly happy to be home and can already feel myself improving although the level of exhaustion is huge. I’ve never been this tired. Everything is such an effort, but it is an effort worth taking as it is another step towards independence.

The physical therapist came to the house today and said I’m doing well. I can now handle the stairs so I could move back to our bedroom, but I have to balance my want of my own bed with the effort it would take to get up the full flight of stairs. So I think I’m going to sleep downstairs at least a couple more nights to assess the situation. Maybe it won’t be such an effort in a few days.

I have an MRI tonight so I decided to walk to the car with a cane instead of a walker and I did it, but gratefully accepted the ride in the wheelchair into Roswell that Dan offered. Can and should are two different things. I’m going to focus on should and not do all I can. 

So tired. And so happy to be back where I belong. We’ll meet with the oncologist on Tuesday to discuss a new treatment plan to keep me home.

Day 10

Yep, you read that right. Today is my 10th day in the hospital and it is getting tough to keep my chin up so you haven’t heard from me in a while.

But, I got good news today. My numbers look good so there is a glimmer of hope for release tomorrow and I’m holding on to that glimmer as hard as I can. 

My roommate left yesterday so I snagged the window bed and have slightly more room. And she wasn’t replaced so that’s nice. The floor is on a hold for new patients due to staffing so maybe I’ll get lucky a little while longer. The roommate lottery here is rough. Did I tell you about the woman listening to her voice mail on speaker at 4:20am? Oye!! Some people really are clueless.

The boys are doing well thanks to Dan. Tyler’s been out enjoying his last few days at home plus packing. Ryan was shuffled around to lots of baseball tryouts. Sounds like he’ll be on the Academy Stars 15u team in the spring. They’re based out of the McKinley mall and he’ll have open  access to a gym as often as I’m willing to drive out there. He’s so excited.

Pictures don’t do the view from my room justice. I can see where the river opens into Lake Erie. I like being near the water since I can’t be on the water.

Frustrated and TMI

Since Friday, when things took a turn, I’ve been saying that I don’t believe I have pneumonia or anything else not related to my disease. I believe we need to treat the disease. Let me go home and I’ll work with the Roswell team. The answer from multiple people is that they won’t send me home until they figure it out as I’d end up back here. I even messaged my oncology team asking questions about the new chemo so I could be prepared. I was told we would discuss it Tuesday morning. 

My words have been ignored by this hospital until tonight when the infectious disease doctor came in. He listened to me and my history of being treated for pneumonia over the last few months. Then he said it is not his area of expertise, but he trusts the patient especially when what the patient is saying aligns with what the scans are showing. Therefore, he’s coordinating a meeting between this hospital and Roswell tomorrow. Thank you!! I finally feel like I can get off this merry-go-round. I fully expect to start a new chemo on Tuesday. This really isn’t great news, but there is no looking back. Make necessary adjustments and move on please. We need to find a solution that works. Fast.

Here’s where you may want to stop reading. 

Earlier in the day, I experienced a horrendous bathroom fail. Decide now if you really want to know more…

So when you lose your hair, you lose it everywhere, which is relevant. Everywhere. I’m not going to explain why, but let’s just say with my nose, I need to have tissues readily available as there isn’t any warning when I need to blow my nose or where it is going to go… left, right, both, fast, slow. Surprise!! I need to be on alert.

Back to the bathroom. I made a mess last week because the commode sat about 4 inches over the top of the toilet seat allowing liquid that was going sideways to escape. I need the commode because I can’t have less than a 90 degree angle between my torso and legs.  I asked for a funnel for next time and they didn’t have one so a nurse suggested using the commode with the bucket attached. Ok, it will require extra cleaning, but it fixed the problem…until today when the bucket fell off!! Seriously. The bucket and contents dropped to the floor. Mid-use! I was mortified.

The male nurse came in and put the bucket back on (while I was still sitting there) so I could finish my business. He left  and it fell off again!! How awful! There really isn’t any dignity in this disease.

But then it gets worse. The nurse didn’t think I needed to wash up. I disagreed so he got me a fresh gown and socks, but he was going to put them on without a visit with soap and water!! And, when he cleaned out the commode, he threw the waste in the room garbage can. Seriously? Did that sound like a good idea? Sigh. I tried to be respectful, but after multiple attempts, I did succeed in getting the garbage changed.

I worry I’m off base when something seems obvious to me.

I’m getting punchy. I really need to go home.

Still Here

I’m not sure I’m ever leaving this hospital as I enter day 7 of a 2 day stay. They just took my morning bloodwork so I’m hoping all looks good. It should after all they did yesterday. There were so many bags of fluid that I’m not even sure what it all was. I know there were 2 different antibiotics, 3 bags of potassium and a bag of magnesium. There was more, but I didn’t pay enough attention.

I’m getting around on my own ok. It is still hard to get back into bed, but I’m ok once I’m up. Getting out isn’t too bad either. I really think I need to move more. I was up walking yesterday morning and spent quite a bit of time in the chair yesterday, but the IV pole limited what I could do.

The room I’m in is small, but my roommate is respectful so I can handle that. She asked me if I go to college!! I guess the lack of hair makes you look younger. Ha ha!! 

Please, please, please let me go home today.

1 Step Forward & 2 Steps Back

Ok, so maybe it was only one step back and I’m treading water, but yesterday was frustrating. I had my discharge orders and things were looking good for going home, but then I popped a fever of 102.5, my heart rate was really high (as in 135 resting and 150s when moving) and my oxygen tanked to the high 70s. Ugh!! 

That all lead to bloodwork and tests (2 EKGs, chest X-ray, CT scan.) So far I know I’m not septic. And hopefully they didn’t find any clots in the CT scan.  As soon as I hear that news, I’ll be demanding to go home as I’m feeling better. It was the strangest thing!

Unfortunately they needed to move me to a different floor so I lost my private room and the ability to sleep for long stretches. Hospitals are no fun and I’ve reached my limit.

My hip still hurts a lot, but I am walking and am able to use the bathroom on my own. I need to drink and eat more.

Home is where I think I’m going to make bigger strides in recovery. We’ll see if I can get the doctors to agree :) We’ll be moving Tyler into the dorm two weeks from today.  That clock is ticking…

Surgery and Recovery

Wednesday was a rough day and Thursday was even worse. I don’t remember a lot of Wednesday once they wheeled me out of my room. I woke up after surgery in a private room which was a nice surprise so that means I’ve been sleeping really well…and a lot! I guess that is the reward for having a horrendous roommate who couldn’t be any louder…she was listening to her voice mail on speaker at 4:20am. Seriously.

Supposedly surgery went as planned. I don’t remember the doctor talking to us.

The pain once the anesthesia wore off around 2am Thursday morning was incredible. Intense! And PT thought I was going to get up and walk?? I did try and despite my best efforts not to, I screamed with any sort of movement. I did get to a standing position, but needed to lay back down. It was awful. That poor guy…we’ll see if he comes back today or sends a colleague.

Luckily they found a medicine that takes the edge off so I can now lay down and not be in pain so hopefully I can get moving today. The pain is more sore than intense now.

I’m ready to go home mentally, but not sure I am physically yet. We’ll see what the doctor says today. They’re moving me to a pill form of pain meds to find something that can go home with me.