Fox and Broom

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

Archive for the tag “Goals”

Changes

It has been a really long time since my last update. My world has been full of lots of changes since my October posting. Some good, some not so good, some heartbreaking.

I started a new treatment called Xeloda in October (or maybe September). This has been one of my favorite treatments so far. I feel so much more normal than I have in the two and half years since I started treatments. It does have a side effect called Hand Foot Syndrome. It dries out the skin on the hands and feet and can cause cracking and sore appendages. I had to have my dose lowered due to having trouble walking. My feet had developed very dark markings. I had thought they were bruises because they were aching so badly. The pain only last three days, but the marks remained. I found out later that the darkening is a common thing among people using Xeloda. I saw it was mostly hands and fingers, but feet are in there also.

One of the funny side effects of Xeloda is that it promotes hair growth. My hair is definitely not long, by any means, but it has been growing much quicker than it ever has in the past. It seems to be a little thicker. I thought that was in my head, but my stylist agreed with me when I had her shape my hair a little. I had a natural fauxhawk going on for me that I didn’t much mind, but my the hair in the back was starting to look more like a mullet. Sorry to the mullet-lovers, but the look doesn’t suit me. My hair has gotten longish enough that it now lays down a bit better. I kinda miss my hawk. I got a few compliments on it from random strangers.

No matter how much I like Xeloda, nothing lasts forever. Especially with my treatments. I will be moving on to a new treatment by the end of this month. My scans have been showing as stable, even showing a bit of regression on my bone scan, but my CA 27.29 (cancer antigen marker) has been moving slowly higher. It is still much, much, much lower than it was at this time last year, but it is starting to concern my oncologist. Sometimes, there is action going on in the marrow of the bones that the scans can not see.

Another big change was moving. We sold our house and purchased a much larger house with my in-laws. Much larger. It is twice the size of my old house. I know it seems weird to move in with the parents, but it is a mutually beneficial move. They are not getting younger and my disease will never go away. In this way, we can take care of each other. Our new house has three levels. Three of my boys live on the top level, the grandparents are on the main level, and Gabriel, Max, the dogs, and I live in the basement. It’s a really nice basement. We have access to the backyard and a very lovely patio. Our area is closed off from the main level, allowing a bit of privacy. Nothing is totally private with four kids. I have my own laundry room and a coffee/tea table. The new schools are very nice. I kept Eldest at his old school as it is his last year there before high school.

Some of the changes have been sad. Last summer, I found out that my personal trainer had passed away. Mike was one of those people who makes your life brighter. I hired him because he had just finished treatment for leukemia and I had just gotten over most of the sickness from my pregnancy and birth of Max. I figured he would understand getting over an illness. Mike helped me find my strength and empowerment again. Even after my training sessions were done, we kept in contact and would visit at the gym. He was one of the first people I talked to when I got my diagnosis. I went through the dark time and when I was able to move again, I went back to the gym to get my legs and arms working better. He would take me aside and pray with me. I also did the same for him, but I didn’t tell him that. Last year, he had started to look sick. He didn’t talk to me about it, but I saw it. The last time we chatted was when I ran into him at the Cancer Center after my final round of radiation on my right eye orbital. I found out he passed away about a week later. Fuck cancer.

One of my best friends lost her mother to brain cancer. She was diagnosed last summer and passed in January. It was so aggressive and fast. It honestly scared me at how quickly it took her. Fuck cancer.

On March 5, I found out that Bekah passed. She was the person I had termed (in my head) as The Other MBCer in town. She was too young. She was kind and motivated. She was inspiring. Fuck cancer into infinity. Her husband wants to set up an MBC Foundation in her name for local people and eventually have it reach people across the state. Her GoFundMe is still collecting if you want to help with her funeral costs and to help him attain the funds for the Foundation.

On a more positive note, I have a lot of adventures planned for the rest of this year. Gabriel and I will be going to Greece in less than a week. We had a little bit leftover from our house sale and threw a mental dart at a world map.

Two weeks after we get back, I will be taking Sam to Orlando to experience Disney World and Universal Studios. I have been saving up for this trip for two years. As of right now, he has no idea we are leaving. He only knows that he has an “appointment” during Spring Break. He asked if he was going to have to have shots or a blood draw. I said yes to both because I am an evil mother.

My sister, Danielle, will be coming to visit me in May. I am super excited about that. I am trying to plan a trip to her area this summer.

We also have camping and family outings in the works.

Before I end this blog, I had an unbelievable change happen in January. Sam’s whole exome genome testing was finally approved by my insurance company. I have been fighting for this test for about four years. I understand that the insurance company is reluctant to approve this type of testing due to the lowish findings rate (30 – 40%), but I am at the end of my options. Our next step would be a muscle biopsy, which is twice as expensive and way more invasive. For those not in the know, Sam was born with a congenital muscular disease. For Sam, it means that he gets tired more quickly and isn’t as strong as his peers. For us, it is constantly worrying about his weight, his social interactions, working on his gross motor skills. He is currently in physical therapy and is testing out as around a 5 to 6 year old in physical skills (he is 8 right now). I am hoping for a diagnosis that can let us know if there is anything more we can do to help boost him up. His DNA was already on file and he did not have to add anything more to it. Gabriel and I flew to Seattle to put our DNA into the batch. Whole exome means that the parents are involved and it will look into our separate genetic lines for answers. Please cross your fingers for us that this will lead to something. We will get answers in three to four months.

One final thing. Of all the things I have learned this year, the hardest and the best thing is to not put off your dreams. Some dreams are expensive, but dammit save your pennies for it. Some dreams need a little extra time. Make time. Don’t put off what makes you happy.

And again, fuck cancer.

Advertisements

Goals

I have two slightly different sets of goals. “Local goals” and “worldly goals.” The local goals are things that I need to either do to myself or can do in my area. The worldly goals are bigger or more expensive to achieve. In the past three weeks, I hit two local goals and one worldly goal.

I was able to finally walk around my block now that the weather has gotten friendlier. My block is pretty big. It is about the size of three blocks all together. In October, I was barely able to walk to the corner and back. This small feat was a big deal for me. April 2, I walked to the top of Garfield Hill. Garfield Hill is a part of the road that goes from 19th (at the base) to 27th (at the top), so it is a decent few blocks to walk. Especially if you are walking up a 17% grade.

Garfield Hill

The view from the top is really nice. I always forget how pretty it is up here. On a really nice day, you can see mountains in that direction.

The view from the top of Garfield Hill.

I had a lot of trouble trying to get a good picture of just what this hill looks like. It is daunting no matter if you are at the top of it or at the bottom. My kids always do the roller coaster “wheeeeeee” when we drive down it. I didn’t drive up or down it at all while we had snow and ice.

Garfield Hill from the top.

Garfield Hill from the bottom.

My walk ended with me looking goofy while admiring this willow tree’s flowers. They were so lovely.


The Worldly Goal that I hit was seeing the Pacific. I hiked so much that I could probably say that I hiked Badger Mountain, but I want to actually do that before I cross it out. It was a pretty amazing trip and I will be forever thankful to Abigail for setting it up. We saw a ton of sea lions, a mama gray whale and her calf, weird tentacles on the beach, sunset over the ocean, and a few really neat geological formations.

My first view of the Pacific. We were still driving to our cabin.

It was misty like this for almost our entire drive to the Oregon coast.

The Shelley Cabin. Our little home for a few days. It has a path down to the beach.

We had an amazing, sunny day. We took the Hobbit Trail to the beach.

There were a few of the tentacle-like things on the beach. I suspect they are actually some form of sea weed.

Picture from a viewpoint. This is the same viewpoint from which we saw hundreds of sea lions and a gray whale with her baby.

Hundreds of sea lions.

A couple of sunset pictures. That day was so beautiful and perfect.

These are pictures taken from our private beach access.

Sunset.

Sea lions inside of the Sea Lion Caves.

A view from inside of the Sea Lion Caves.

My final picture of the Pacific before we drove away from the cabin.

We stayed in a lovely little cabin between Yachats, OR and Florence, OR. If you ever need to rent a cabin in this area, I highly recommend searching for The Shelley Cabin. The Pacific was everything I thought it would be and more. It is definitely more powerful than the gentler (sort of) Atlantic where I grew up in Florida. It was very chilly out, so I did not even try to dip a toe into the water. I just can’t handle cold the way that I used to. All in all, a wonderful trip.

Oh – on our one sunny day, Abigail made me dress up and we had a photo shoot:

A Last Unicorn theme

Unfortunately, the horn broke.

Post Navigation