Fox and Broom

A mom's adventures in keeping healthy, keeping her sanity, and making stuff.

Archive for the month “February, 2020”

The Legacy Retreat Part II

I suppose I should cut any surprise anyone might have and admit that I used a wheelchair. It’s going to be visible in this post. I hate wheelchairs passionately. The last time I was stuck in one, I was so weak and in so much pain that I had trouble speaking. They evoke memories that I don’t like to revisit.

Now that I got the hate on wheelchairs out of the way, I will explain it.

Somewhere around November, I started having horrible back pain. I started limping and there were more than a few times when my right leg decided it was done being a leg. It happened once while I was going downstairs. About scared the pee out of me. But I didn’t spill my coffee.

My next scans showed that I had two compressed discs in my back. No idea when or why they happened. It explained the pain and the leg suddenly crapping out on me. My oncologist, Dr. C, actually happened to be around when it did its thing.

“Does this happen often?”

I had to admit that it did. He had an office assistant get a cane for me. It was one with four feet. I tripped over it instantly, cuz that is how I roll. My husband got me one with just one foot for Christmas. It is beautiful, with a raven as the handle.

When I filled out more paperwork in November/December for the retreat, I was asked if I would like to use a wheelchair. I chose to use a wheelchair just at the parks.

I started a new chemo in December. By early January, I was no longer limping. I gave up using my lovely cane. I still had an appointment with a pain doctor and kept it to ask him about this.

With my new chemo, I take a lot of steroids. The steroids took care of the back pain. I don’t need a steroid shot at the moment, I ingest enough to help. I am happy to take the pills if I don’t have to get that injection.

There were two things that I did not think of.

I get Zometa injections with my chemo. Zometa helps to keep my bones from falling apart. It has the scary side effect of necrosis of the jaw. I have to let my oncologist know if I will need any sort of jaw, tooth, or gum surgery. I take very good care of my mouth. I have never flossed so much in my life and I see my dentist twice a year.

Another side effect of Zometa is acute bone pain. This can be helped with Claritin. Yes, the allergy med. It has an ingredient that honestly helps with bone pain. Most of the time.

The second thing I did not consider were the Granix injections I take after my chemo. I get the Granix sent to my house and I inject myself for five days after my chemo. The Granix helps to plump up my white blood cells and keeps my immune system working decently. Chemo is really rough on the cells. Guess what one of the side effects can be. Yep. Bone pain.

When we left for Orlando, I had gotten an infusion two days prior. By the time we had arrived, I was having trouble standing up and some trouble walking. I was glad that I had asked for the wheelchair ahead of time.

Now that I have the long, drawn out version of the explanation taken care of, let’s get into February 1, Day 2 of the Retreat.

To start the day off right, we shook ourselves out of bed at 6:30 am. We had tickets for the breakfast buffet at Tradewinds. I have never had a buffet like this in my life. The cook made a custom omelet right in front of you. You could get fresh squeezed orange juice. If you wanted honey, you scraped it off of the honeycomb. It was amazing. I never did get an omelet, but I had scrambled eggs and oatmeal every morning. I am still trying to figure out how they made the eggs. They were the fluffiest, most delicious scrambled eggs I have ever had. I have tried many different styles of scrambling eggs since I got home and none of them are the same.

After breakfast, we went to our sessions. I wish I had written down the topics, but I won’t be writing about anything that was spoken in our groups, anyway. That is private.

After we got the boys from their groups, we headed out to the buses and loaded up. My mom was able to ride the bus with us. I wasn’t sure if she would be allowed. We were given our lunches that had been ordered in December. I couldn’t remember what I had ordered for everyone. It was kind of like Christmas.

Our first park was Magic Kingdom at DisneyWorld. I grew up going here pretty often. It still makes me smile.

We had five volunteers with us. They were awesome. Rob had the whole Fastpass thing down pat. I was in awe of his skills. The Fastpass is not something that I grew up with and I haven’t been to DW often enough in recent years to figure it out. We went on more rides than I think I have been able to go on since the ’90’s. The boys had fun. Gabriel had fun. I had a blast.

I didn’t go on all of the rides. There were some where I just wanted to watch my boys smile. It was a perfect day.

By the time 8pm rolled around, along with the first bus back to the hotel, we were ready to leave.

The hotel housekeeping had left us a few surprises. Milk and cookies and origami towels. The boys had a swan in their bathroom. It was no longer a swan when I tried to take a picture. Gabriel and I had Baby Yoda. Squee!

A funny bit of trivia to end this post: I found out that one of my volunteers has a daughter who has my brother as a teacher. It is a small world after all.

The Legacy Retreat Experience Part I

I feel like I don’t know where to start. I have so much to say and I just want to blurt everything out. Most of it I want to blurt out of order. I think this is why I am a better writer than a speaker.

In May 2019, I applied for a Legacy Retreat with Inheritance of Hope. I had heard about this nonprofit from one of my MBC support groups on Facebook. I actually started my application process in April. It took me a very long time to work on one of their requirements: writing letters to my family. I kept putting it off. I couldn’t seem to come up with the words. I will need to do them over. I will speak more on this later.

In July 2019, I got a call from Heidi on our way back from Seattle. She asked me a few questions and gave me a lot of information about what the retreat would entail. I had decided on the 2020 February Orlando one and was happy to find out that was the one for people with metastatic breast cancer.

We would meet in support groups everyday. Patients and caregivers, kids according to their ages. We would not just be dropped off at the theme parks and left to our own devices. Volunteers would be with us to help with kids, carry items, and so on. Main meals would be provided. Flight tickets and hotel fees would be taken care of.

I was a sobbing mess by the time I hung up the phone. It was so much more than I had expected.

February took forever to get here.

We arrived in Orlando on January 30. Our hotel would not be ready for us until January 31, so IOH put us in another hotel for the night. We were super exhausted and hungry. We ordered Applebee’s through Doordash. It was pretty awful. I knew the fries probably wouldn’t be great, but we were missing two orders of fries. Sol’s burger was missing its top bun. I’m not sure how that happens.

The kids were pretty happy to just go to sleep.

In the morning, after breakfast, our volunteers came to get us. There were a lot more of us staying in the hotel than I had guessed. We all boarded a bus. The volunteers put our luggage in the storage area. They were serious about making us let them help.

We took a little bit of time to settle in. Gabriel left with Rob, one of our volunteers, to buy swimming suits for the boys. Rob took the boys swimming and I just had to relax in a giant hammock. The boys had a blast.

The boys, including Gabriel, got to check out the hotel arcade. I think I took Max at that time to get a snack in the hotel Starbucks. We were both a bit peckish.

At around 3:00, we went back to the room to prepare for our family photo session.

I always kind of dread family pictures. My boys are wild and embrace that wildness. To the point that a lot of pictures are blurry. Jesse once had to get dental x-rays 5 times because his x-rays were blurry. It’s kind of an issue. I deal with it by reminding myself that the imperfect pictures are really the perfect pictures for us. I love those pictures more. I also love to laugh about them.

Our photographer was incredibly patient. We did a lot of walking around the pool and garden area. It was lovely. We had fun and managed to get a lot of really nice pictures. I also got a lot of pictures of my boys playing. One is evidence of Sol booping Sam on the nose. Caught ya, Bubba.

At 4:30, we were introduced to our Sessions. Gabe and I were in our own group, Sol was in the 14+, Sam and Jesse were in the same group, and Max was with the preschoolers.

I didn’t know what to expect. I had never been in a group with this many MBC patients. I figured we would discuss ourselves and it would be pretty light. Nope. I was near the end of the introductions and was already emotional from hearing the stories of the other moms and caregivers. I hate crying and I hate crying in front of other people. I just couldn’t hold it in.

The deluge was something I needed. I haven’t allowed myself many moments of crying in anger or fear or sadness. I felt like I needed to be strong, put on a good face, show my kids and the world that I am okay. I let out 3 1/2 years worth of tears in front of strangers. Probably because they intimately understood the frustrations I felt. I wasn’t happy about the tears, but I felt much better for it.

My mom had arrived by the time we were out of our sessions. I was not able to set up a lot of the same things for her that had been set up for me. Our dinner, for instance. She didn’t mind. Dinner was loud and busy.

At 6:30, we went to the fanciest, most casual, formal dinner ever. On my way into the ballroom/dining room, I mentioned to a volunteer that I was feeling really chilly. Less than 10 minutes after I sat down, I was draped in a blanket. These people don’t mess around.

We ate a four course meal, all of it delicious. We were introduced to people involved in creating our retreat. Elsa, Mickey Mouse, Minnie Mouse, and Buzz Lightyear made appearances. We made jewelry with the Kendra Scott people and got a few freebies from the Dillards folks.

The cheesecake was exceptional.

Jesse and Max had a blast dancing to the music. The little kids didn’t eat much of their food. There were so many distractions. I couldn’t complain. I knew how they felt.

Our first day on the Legacy Retreat had been practically nonstop and filled to the brim with activities. We left the ballroom maybe a touch early, but none of the kids complained about leaving. I was pretty thankful Nana Jan was there to help get the kids in bed. It didn’t take a lot, really. They collapsed and slept well.

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