Fox and Broom

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

Archive for the tag “fuck cancer”

2020 February Legacy Retreat: In Memoriam

One of the hard parts of meeting people with a disease such as Stage IV Breast Cancer, is death. Thirty-one families were served at my retreat. Four of my sisters have passed since the Retreat. Gabriel has had a hard time with this. I told him it never gets easier.

Cassie Newman, February 16

Leah McDonald, February 21

Andrea Burch, February 22

Crystal Baird, March 4

I am so thankful that their families have the memories from this Retreat.

Fuck cancer.

The Legacy Retreat Part III

February 2nd was a full day. Lots of laughter, love, sadness, grief, and healing. This day is what makes Inheritance of Hope what it is.

We woke up early to indulge in the tasty buffet. My mom went to church while we went to our sessions. She waited on us to be done before she drove home. Rob had managed to put together a picture of her and I in a frame to give to her. She’d had a fun time with us, but had some work waiting for her and she had no interest in going to Universal Studios.

I won’t discuss the sessions, but I will tell you that I brought up Camp Kesem. If you are unfamiliar with this organization, please look it up. Especially if you, a family member, or a friend has kid(s) and has been affected by cancer. My older kids will be going for their fourth year this summer. My kids always come back happier and more confident.

The kids threw eggs in their sessions.

I am pretty sure Max just threw eggs to throw eggs.
Jesse definitely just wanted to throw eggs.
Sol got some satisfaction in throwing the eggs.

They were to write something on the egg that scared them and throw it as hard as they could. If it weren’t so messy, this would be a great stress reliever in general. We might do this or something similar every once in a while at home.

To make it quick, we got on the bus, got our lunches, and landed at Universal Studios. It was super sunny and perfect for a fun time outside. What I have not mentioned previously is that Gabriel and I were going to be leaving the park at around 4. The boys were staying with our volunteers to play until they dropped. Or until 10.

Obligatory dorky family photo. Laugh all you want, it was fun.

IOH gave us a Gold Pass. I had no idea such a creature existed. This wasn’t even in the realm of a Fastpass. It was something different. We would stroll up to the person checking Fastpasses, show them the Gold Pass, and they would call an escort for us. Ho-ly cow. We were usually led to a door and taken to the ride through back hallways, allowing us to go ahead of the Fastpass and regular passes.

We went on Minions and Transformers. Max LOVED Transformers. We spent some time in Diagon Alley, then a lot more time in Hogsmeade. Jesse got his wand. We rode Escape From Gringott’s and went on Hagrid’s motorcycle ride twice. That ride is awwwwwwwesome. Poor Sam hit his head pretty hard while riding on it and was no longer so enthused about it.

I am laughing because Megatron moved and Gabriel jumped. I told him I would protect him from Megatron.
The sidecar was fun, but I prefer being on the motorbike.

Gabe, Max, and I went back to the hotel. Max was so worn out that he fell asleep on the bus. When we took him to the toddler area, they put a pillow down for him. He woke up enough to see the pillow and ran to it. For a little monster, he can be so cute. I suspect it is his survival mechanism.

Gabriel and I were scheduled for 4 things. The first item on our list was a visit with a counselor. This sounds like a weird start to a date night, but it helped clear the air. I am not so good at expressing myself. I hold my thoughts to myself as if they are precious stones. It’s kind of a Scorpio thing, I guess. I let Gabe take some of those stones and I left feeling lighter and he seemed happier that I had let him take some of the load.

We separated to get pampered. He got a massage and a new shirt. I had my makeup done, picked out some Kendra Scott pretties, and new clothes from Dillard’s. My makeup had taken up more time than it should have, so we were rushed to our next appointment.

The Legacy Video.

This is probably the most important thing that came from the retreat. I wasn’t sure I would be able to do this. I was afraid that it would just be 10 minutes of me weeping. This is the hardest thing in the world. I made a video, with Gabriel, for my family. It is a visual and auditory reminder of me: my face, my voice, my personality. It is something for my family to hold on to after I have left this plane of existence.

I got the courage to do it from our volunteers, many of whom had been served on previous retreats. I got the courage from videos of the children of parents who had passed. I got the courage from people who spoke about how much it meant to them to have something like this as a reminder of a loved one.

So I just started talking. I pulled up memories. Gabriel has been a part of my life for so long that he was able to talk about the same memories with me. The talking became easier and the anxiety just disappeared. I told my boys silly stories about things I had done. I told them about silly things they had done. I told them how proud I am of all of them. How so very talented each one is in his own way.

My heart felt so good after we had finished. I knew that I would have to rewrite the letters that I had originally written in my IoH application. I will have to write more than one letter to each person. It was an inspiring experience.

We were then sent to Bonefish Grill for our date. We shared our table with two other couples. We had good conversations and good food.

We met up with our kids when we got back to the hotel. I was worried that Max would be too refreshed to sleep, but he was ready for a full night’s sleep. The boys had had a lot of fun playing around at Universal. They had spent most of their time casting spells in Hogsmeade and Diagon Alley. They were totally satisfied with the day. Our poor volunteers look exhausted.

Someone once told me to learn something new everyday. I learned many new things on this day. It was a good day.

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.

Third Cancerversary

I have made three years. Fuck you cancer. I feel like this is a big ‘versary for me. I don’t know the exact statistics, but a large number of MBCers are only given about 3 years. Fuck you again cancer.

It has been a bittersweet year. I am thankful to still be here, but I have lost a large number of friends to this damned disease.

Marg was working on having two books published. Both of them were about Ann Lowe. One was to be a children’s book, the other was an adult book. If you don’t know who Ann Lowe was, please look her up.

Beth had planned on a girl’s day out horseback trip. I will do one in her honor with my kids.

Gloria had brain cancer. It took her from her family and friends way too quickly.

Mike had leukemia. He was a survivor. He was never supposed to leave before me. He was my personal trainer, mentor, and friend.

So many more.

I would love to give you the statistics on MBC, but I wouldn’t be able to give the correct numbers. Supposedly, I have a 27% chance of making it to the five year mark. However, metastatic breast cancer numbers are off. They only include the people diagnosed initially with MBC. These numbers do not include people who were diagnosed with an earlier stage of breast cancer who were then diagnosed later with Stage IV.

I feel like this post is more harsh than my previous cancerversary posts. I am dealing with pain at the moment and I am sure that is making me pretty snippy. Funny enough, the pain is not actually cancer-related. It’s a little ball of fluid (edema) that has decided to live in my ribs. If you look up edema, you will mostly find articles about legs and arms. There isn’t much info about abdominal edema. I get to have the weird one.

As per my usual, I went through a few different treatments this year. My current one is working really well for me. My biggest issue is that is a once a week chemo which then requires two days of going back in to get Granix shots. The Granix keeps my white bloods cell numbers up. My treatment is Paclitaxol or Taxol for short. Having to plan around three days of appointments has been difficult, bu it is keeping my cancer tame and I am genuinely thankful for that.

The year has not been full of just loss. Grief can just feel bigger than the good things at times.

I met my biological mom and brother last August and my sister and a niece just a few months ago in May. I have also met a cousin and have come into contact with numerous aunts, other cousins, nieces, and nephews. My family nearly doubled by coming into contact with my birth family and that is saying a lot. I have a ton of cousins and now I have a ton more. My heart is fuller.

We sold our wonderful little house and bought a bigger house with my in-laws so we could keep an eye on my in-laws. It was a good move, but it was also hard to leave my house.

Gabriel took me to Greece. It was amazing and magical. I really need to write about it and post pictures.

I took Samedi on a surprise trip to Orlando. I told him he had a doctor’s appointment and was going to have shots. Then we wound up at the airport. I had spent two years saving up for this trip and it was absolutely worth it. He had a blast at DisneyWorld and, even with rain, he loved Universal Studios.

Here’s to another year of staring cancer down, savoring the small things, and celebrating the big things. As always, Fuck Cancer.

Having fun with a new wig.

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.

The Day

I have been working on blogs about my Paris adventure, but I wanted to put up a quick post for today.

A year ago today, I found out that my pain was definitely not caused by a pulled muscle. A year ago today, my life turned upside-down. A year ago today, Dr. C told me that I had metastatic breast cancer that had spread to my bones. Stage IV. No cure. A death sentence.

It isn’t an anniversary that I want to remember. I was in agony and losing weight. I had gotten to the point where I was having trouble walking. I was exhausted. I was angry.

My first thoughts were for my kids. I couldn’t leave them. Not yet. I very much want to see them grow up. I very much want to see what kind of humans they become. I also, maybe selfishly, very much want them all to remember me. Really remember me. Not just hear about me from other family members or friends.

After my diagnosis, I went downhill fast. I honestly thought I wasn’t going to make it to my birthday in October. I believe my children and my anger brought me through that time. The radiation treatments helped with my pain and my hormone treatments helped to get my cancer somewhat under control, but it was my children who got me through the other things. I thought of them as I forced food down my throat. I thought of them as I forced myself to reclaim my muscles and start walking again. I thought of them as the worst of my symptoms started to fade and now, a year later, I am not the skeletal, sickly, creature that cancer wants to make me.

Now, I enjoy eating again. I have been working on taming my garden that went out of control. I walked miles and miles in Paris. I took my oldest son to Disney World and Universal Studios. I walked a 5K, which I didn’t think I would be able to do again. I have hope that I now have years instead of months. I have met a lot of the goals that I set for myself last year at this time. Every time I cross one off, I get a feeling of vindication. Fuck you cancer.

Living with cancer means fighting everyday. I am a warrior.

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