Fox and Broom

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

Archive for the tag “don’t ignore stage IV”

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.

Obligatory Pinktober Post Year 2

Yesterday was my 42nd birthday. I didn’t think I had a big chance of making it to my 40th, but here I am. Suck it cancer. Now on to my more serious thoughts about Pinktober.

Even before I was diagnosed with metastatic breast cancer, Pinktober put a bitter taste in my mouth. It isn’t awareness that is needed. Buying pink items will not usually help fund what is really needed. We have the world at our fingertips. You can do quick research on any company/nonprofit that is claiming to donate funds for breast cancer cures before purchasing pink items.

Unless you have been under a rock for thousands of years, I am sure you have heard about breast cancer. “Breast Cancer Awareness” is not needed. What is needed? Support. Research. More research. Proper statistics for Stage IV.

In the two years since my diagnosis, I have come to realize that I am one of the lucky ones to have an amazing support system. I have family, friends, and a great local support group. I have come across people with MBC who have only Facebook support groups. No family. Few friends. No local support groups. This means they have to depend on taxis or public transportation to get to appointments. Some cities have special transport for cancer patients, but this is not a service available everywhere. They go through doctors appointments, treatments, all the exhausting and overwhelming information on their own. These people are stronger than I am. I’m not sure how to fix this. Local support groups are so important, but they also take a lot of work to get going and keep going. If you know someone who might not have much support, let them know that you are cheering them on. Have a box sent to them from one of the many breast cancer foundations out there. One of my favorites was the gift box from The Gracie Foundation. Ford Warriors In Pink has also given me some things that have helped. They funded a free year of meditation from Headspace and I have also received two weeks of free food from Green Chef (probably my absolute favorite box meal company, but oh so very expensive).

These are only two companies. There are many more out there that will send out small gifts to patients. Some nonprofits offer experiences rather than gifts. Send Me On Vacation is one that I can think of right off the top of my head. In any case, receiving an unexpected gift is always a spirit-lifting experience.

Research. Probably one of the most overlooked, kind of important things regarding metastatic breast cancer. MBC kills 100% of the people who have it. When it will get you is kind of up in the air. Some people go quickly and some metsters last for 20 years. It depends on how each person reacts to the available treatments.

I am not asking for research to stop on other types of cancer. All research is important. I just want more. I’m greedy like that. The hard part about this request is that every single person with cancer has a slightly different cancer. We can identify cancers due to where they start and how they behave. After that, it seems to be a guessing game. A person’s genetics can affect how treatments work. So can the makeup of the cancer. For breast cancer, that can be hormone (estrogen or progesterone) positive or negative. Some people are only positive on estrogen but not on progesterone and vice versa. The HER2 protein can play a role. About 1 in 5 cancer patients are HER2 positive.

With all these factors and more to consider, I understand why cancer research is hard. In the past few decades, we have drastically expanded our understanding of cancer. And it just isn’t enough. There is still so much more that we really don’t understand. There are studies going on that are really exciting and could lead to new treatments. If they are funded enough to continue their research. Organizations like Metavivor help to fund research. This is why I choose to donate my birthday to them every year. You can also give on their site or purchase something from their store with the proceeds going to help people like me.

The MBC Project is also working on research. In fact, if any mets sisters or brothers are reading this, get your butts in gear and sign up. They will ask for information as well as genetic material (spit and blood). Even if we will not benefit from it, this type of research could help future generations.

Statistics….

Metastatic breast cancer counts are off. The numbers should show as higher, but the majority of people who had been diagnosed with early stage BC are not counted in the MBC stats. Why? I have no idea. I can tell you that approximately 1 in 3 people diagnosed at an early stage will wind up battling for their lives later on with stage IV. Only about 5% of people originally diagnosed with BC are metastatic at the get go. By not counting the people who were diagnosed at early stages, this makes MBC seem insignificant. Rare, almost. Like a unicorn. Except it isn’t really a unicorn. It is a goat in disguise. More common than one would expect.

So, if you like pink, then buy it. I just ask that you consider where your “donation” is really going. It takes just a few screen presses to make sure your money really is making a difference. If you want the item anyway, go for it. All I ask is that you also consider helping in some way. Support. Research. Statistics.

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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