Go! Well almost.

The girls now each have a few pairs of shorts that fit them so that’s encouraging. Hopefully it’s enough. I have packing lists ready for them to pack for themselves and they are doing laundry this afternoon.

It’s a lot to think about packing for 10 days. It’s pretty overwhelming and I haven’t been feeling good the past couple days. I’m very anxious about the trip, because I never know how I am going to feel.

Today turned out nothing like we thought it would.

Originally, Tom was going to go up to Seattle for a couple meetings this morning. Those were rescheduled last night after I was in bed, so I didn’t know that until this morning. It was a nice surprise to find out he would be home all day.

The next unexpected thing was my “visit” to the ER. I put “visit” is quotation marks because I actually was never admitted to the ER.

My lower back and tail bone are really hurting and have been for the past few days. I had to go up on my pain meds which I hate to do, but have to right now.

Please pray that the pain will calm down as the extra pain medicine makes me very drowsy.

Tomorrow, a wheelchair we ordered will be delivered. It reclines and so we are hoping that I might be able to sleep in it as well. I will keep you posted on that.

My bone scan results showed what we knew…more growth. Some new growth in my tailbone are, which explains the new pain I have been having.

In other news…we are not going to Hawaii for a few reasons, but the main one being that every activity is based around water and I have a tube coming out of my body and can’t get in water.

So we are going to Disney World, which was our first choice anyways! We booked a 10 day trip and are staying at the Coronado Springs Resort. We booked a casita that has a separate living room so we’ll have plenty of room to rent the recliner or bed I need.

We will go with no expectations except to have fun as a family. I will do what I can and rest as I need to. We will rent a wheel chair and they can take turns pushing me around. Tom and I will be flying in first class and the girls in coach.

So that’s what’s going on. We leave in 2 weeks. The girls need a lot clothes and are excited to shop together. Thanks to those of you who have offered to take them shopping, but they are fine going on their own (and have asked to).

This is a big trip and I’m so excited. Well be moving slowly, but it will still be fun. Please pray we all stay healthy. We are going to keep to ourselves as much as possible for the next couple weeks to help with that!

Will you especially be praying for my emotions on this trip? I never know what little thing is going to hit me. Tonight we were going through all the shoes we had and it looks like all 3 of our girls all wear a size 9 shoe. We’ve always been curious which one will end up being taller. Then I realized I probably will not be alive to see who is the tallest as Ashley is still only 11. I started crying. Why couldn’t I get cancer when the girls were older? I am going to miss out on so much!

The CT results from the radiologist were in My Chart about an hour after I got home on Wednesday. I didn’t need to Google anything to get the jist of it. The cancer has spread.

We talked to my oncologist on Friday afternoon to make sure we understood it correctly and to talk about treatment options.

Another day at the infusion center…a long day….an hour longer than normal.

It started with waiting 15 minutes to get a room.

Then another 15 to see my nurse.

Then my first port access didn’t feel right, almost like saline was just going in my body and not in the vein through the port. Something was definitely not right! So I was poked again.

Then blood was drawn. She realized 10 minutes later she needed more for an additional test. Not a big deal, just more time.

I feel like I might sound like a broken record.

Anxiety.

It’s horrible.

I’m really struggling with it, most of the day, everyday.

PT – is on hold until the therapist talks to the Dr. as I was having a lot of back and hip pain after doing the exercises just 2 times.

I have a bone scan scheduled for the end of March. There’s always something to look forward to!

Our bi-weekly housecleaning started today. I know Tom is thankful to not have to clean this weekend!

I find myself wanting to hide out and be alone more and more. We just went up on the dosage of my antidepressant. I’m hoping that will help.

My palliative care doctor arranged to have physical therapy come out to our house once a week for 4 weeks to help me try and get some strength back in my legs. My legs have felt very weak for a while, and right now, I can’t squat or kneel down and get back up on my own.

I have said a few times I would write a post about what’s been going on in my mind. Those are the hardest posts to write because I feel so vulnerable as I share what I’m dealing with. I don’t want people to judge me or think badly of me. However, when I started this blog, I said I would be open and transparent about this journey, so I can’t leave out one of my biggest struggles.

I hope and pray that by being honest and sharing what I am struggling with, it will in some way encourage someone else and help them know they are not alone. I also know that not everyone who reads this blog believes what I do about God. Even if you don’t believe in God at all, will you consider reading the rest of this post? It would mean a lot to me.