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In the whirlwind of events that surrounded my cancer diagnosis, I didn't know how long I would live. Things were very uncertain. If anyone has ever googled the prognosis of stage IV metastatic breast cancer, you would know it's not fantastic. I choose very deliberately not to dwell on it. Occasionally, I do reflect on what it all means. This is one of those moments.
Tomorrow, I turn 50. I am privileged to celebrate my 50th birthday. Perspective is everything, isn't it? I would never have had this mindset BC (Before Cancer). I probably would've been lamenting this getting old business. Facing one's mortality allows me to dwell on how mindfully I want to live my life. I choose to live as fully as I can. I do things I would normally not have done BC. I said yes to an Italy competition for my daughters. I said yes to France with Ben. I said yes to spending so many moments with my children. I have a trip to take eventually with my son to Europe.
Living with cancer comes with its challenges as well. I often wonder if I will be there for my children's weddings. Oh, I so want to be. I want to meet my grandchildren. I don't know how long I have here. I know that no one does. I do know that my family is pretty long lived and I would most likely have lived to my 70s. I'm pretty healthy despite my cancer although the treatments can wear me down. I have a knot the size of Texas on my hips from the shots I receive monthly. Despite all of that I am blessed. I am loved.
God willing I will see many more birthdays.
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I haven't been keeping up any gratitude exercises so I thought I would list them here for each day of November. I am thankful for (in no particular order)
- my parents
- my husband
- my children
- my faith
- my siblings
- my friends
- my co-youth group leader
- my infusion nurses
- my pharmacist
- my doctors
- my health
- my ability to get up every day
- my ability to exercise even through the fatigue
- my cancer because it caused me to stop and look deeply and completely at my life and to enjoy it fully
- ballet for all the good
- ballet for all the bad because it taught us a LOT
- Facebook and Instagram because it keeps me connected to my greater community
- prayer because it keeps me grounded
- the youth in the youth group
- Confirmandi because I'm blessed to be able to witness their growing knowledge and love of their faith
- the clergy at our church
- Patriots
- my in-laws for loving me all these years
- cutting edge cancer research which has kept alive for this long
- my sewing skills so I can make my last tutus for my beautiful dancing daughters
- my friend, Sue, who is taking me to NYC to watch her daughter perform in an off broadway show
- Army for bringing so many wonderful people in my life even if it takes them away again
- perspective and the ability now to let people go
Happy Thanksgiving, y'all!
Throwback to Chopiniana, spring 2017.
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There are times I wonder what I should have done differently. I often think maybe I shouldn't have cared so much about the type of training my girls received. I feel regret for having met certain people. The damage these people have done to my family is huge. The mental recovery from it will take years. However, I can't lament too much because through these people other people came into our lives. One teacher who moved away to Washington DC. And then mainly, the girls' ballet coach who took them to Philadelphia, Tulsa for YAGP and Italy. She and her children have played such a positive role in our lives. So, do I choose to feel the regret or the joy and happiness? Mostly, I feel the joy. Occasionally, the regret rears its ugly head.
These were the things I was thinking about driving home from Kansas last Sunday. Also, thinking about other people who have come back into our lives. I speak to the mom occasionally but this year they were able to start helping with Kidz TherapEZE ballet through their PRO (People Realizing Opportunity) program. I missed her.
This is the church where the wedding took place last week. I love this statue of St. Michael the Archangel. St. Michael the Archangel, pray for us.
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Today is Halloween but it's also the last day of Breast Cancer Awareness Month. There's not a lot I can say except I wanted to reflect on my journey. I'm doing as well as can be physically. I've always had a very strong immune system and it's really helped keep me healthy except for what's going on inside. There's an insane battle going on inside.
I don't look sick. I actually still have a lot of energy and I can get a lot accomplished. Except. Yeah, except I tire more easily. I am always tired to be honest. Just completely tired from the time I wake up to the time I go to sleep. The side effects from all the different medications can be pretty hard. My brain fog is pretty frustrating and sometimes amusing. I nap a lot or sometimes just lay in bed.
Like I mentioned before, the prognosis is not very optimistic, but I have hope for many more years. I pray for many more years. I'm not afraid to die. That's not it. What I am afraid of is leaving my children. I want to be around for them. I want to be 80 years old and see my grandchildren grow up. I want to see the kind of adults my children become. I know they'll be such amazing people. I wonder about the kind of people they marry and the relationships they have together as adults. I have an amazing list of women to mentor my girls when I'm gone. I'm so very blessed to have so many awesome and varied women to help them.
I'm not going anywhere anytime soon. I pray every day for many more years. I actually beg for them. These are my real raw thoughts on the grimness of my prognosis. I don't very often dwell on them. I can't. Life is too precious to worry about it. I choose to live fully and enjoy life fully.
The Spanish Steps in Rome. I miss Italy.
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October is breast cancer awareness month. It used to be that you'd see pink everywhere. Pink is good, I guess, but what it represented doesn't represent me. It represents an organization that doesn't use very much of what is donated towards research. I'll wear pink anyway since we all know what the pink does represent, breast cancer awareness. First, let's get this out of the way, GET YOUR MAMMOGRAMS!!
According to the American Cancer Society, (2016 estimates), there were 246,660 new cases of breast cancer. And amongst those, about 6% were diagnosed immediately with stage IV metastatic breast cancer. Metastatic meaning the cancer cells had metastasized (spread) to other parts of the body. I was among the 6%.
I won't go into the prognosis. As we all know, it's not great. I won't put the statistics here because my children read my blog. We don't discuss numbers. We live with it.
This is the face of someone living with metastatic breast cancer. I don't look sick but the battle is going on hard inside.
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So we had a bit of a scare this Tuesday. Remember when I said I wasn't feeling well? Well, it all came to a head on Tuesday. I was out grocery shopping when all of a sudden I started to feel really horrible. My heart was racing (111 bpm) and I could feel something was not right. I finished, went home and checked my blood pressure. It was high. So, I called the nurse and went off to the ER. Ugh. Can I tell you how awful the ER can be? Especially the military one? Apparently Tuesdays are busy days. I waited for over 4 hours to get into a room. I thought heart, the PA was more worried about my lungs. Turns out the symptoms I have been having are indicative of blood clots in the lungs. Who knew? I didn't. Anyway, I had to have a CT with contrast on my lungs (yuck). Turned out my lungs are fine. My heart is fine. I have not idea why all of this happened.
I have several takeaways from this. One is that there has to be a better way for me to get care when I feel crappy like this than getting sent to the ER. I don't know if that means I have to move my care off post (military post) to a civilian hospital or not. Second one is that the PA needed to learn how to run things with a cancer patient. He never asked my staging and didn't see it in my records. He saw my lung CT results and thought he needed to break it to me that my cancer had spread. My girls were with me. He came in all glum and started to ask questions that made me think things were BAD. He also needed to ask if my girls needed to leave the room. I think he thought we were a little nuts when we were relieved that's all he wanted to say.
Social media…I've been off for a bit and it's interesting. I read more. My phone battery lasts all day. LOL. Anyway, here's my takeaway from my absence from social media. I miss my friends. I miss seeing what everyone's up to. Homeschool mom life can be lonely. And, without the constant ballet I don't see adult friends often. BUT! I've enjoyed being off social media and plan to come back soon. When? Probably in October. I'll change my habits a bit. I will try to not be on it so often. And, I'm going to be very intentional about what I post. I'm in the midst of a wonderful study through Take Up and Read. It's made me examine the role of social media in my life and how I use it. I don't always use it for the greater good which is to always glorify God. I don't mean go out there and evangelize all the time but I do mean to act with kindness and charity. To not be petty. For instance, (I'm going to expose myself), I would post stories on my Instagram at various times of the day and check to see if certain people looked at it. Then, I'd get all riled up that they did. I was trying to catch them in the act of looking to see what I was doing. Why? I had removed them as followers because they were no longer friends either in real life or on other social media. But once I noticed them checking my stories which required them to go straight to my profile, I kept working to "catch them in the act". For what purpose? So, I'm going to post for myself and only for myself. I'm going to make sure my social media is a place of positivity my word for now and through 2020. I am human, y'all. There have been a lot of people in the past year who have hurt me and I have lashed out. Forgive me.
I'm a bit discombobulated today. It's been a long week. I was so out of it this morning that I walked out for spin class in my workout leggings but forgot to change out of my pajama top. I didn't even notice until I got in the van. Y'all, my younger two girls didn't even ask me why I still had my pajama top on. I guess I'm just that out of it that they think it's normal. I'm babysitting my younger nieces tomorrow into Saturday. I'm looking forward to it. They're super adorable. I'm still working to expunge all the toxins from the CT and the PET scan. I'm tired.
It's time to start thinking about Christmas gifts and cards. Sigh. How did it get to be this late in the year?
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Cancer Summary:
This Wednesday I have a PET scan. I'm super tired and just not feeling well. I haven't been in months but this past week has been particularly brutal. Prayers would be appreciated.
Travel Summary:
I LOVE to travel. We still have one more road trip ahead of us as a family. I'm headed to Port Aransas sometime in October with my online/IRL (in real life) homeschool friends. Then 2020! In March, Ben and I are headed to France. He was supposed to go with his cousins John but then John's wife is going so I'm going. We are turning this into our honeymoon/25th anniversary trip (we will celebrate 25 in October). Four days in Normandy and 3.5 days in Paris.
General Summary:
Not much else is going on here. We are keeping busy with school, appointments and church. I hope y'all are having a good week.
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School summary:
The girls are off and running with school. Michaela is in her freshman year of college at the local community college. She will transfer (hopefully) to Texas A&M next year into the Dance Science program in the Kinesiology Department. Her goal is to become a physical therapist specializing in dancers and athletes. Emma is a junior in high school. She is taking a dual credit math class and is doing well. Jordan is a freshman in high school. I don't know how this much time has passed and I only have 2 students left in our homeschool. All told, this is my 16th year of homeschooling.
This was taken in Boston before we headed to the Museum of Fine Arts.
Ballet Summary:
Jordan continues to take classes. The drive isn't too arduous even though I do get tired. The three of them also take private lessons with a former Ballet Magnificat dancer. She was Michaela's leader in her dance in the spring show when she was 4. It's a nice close to the circle and I love it.
Jordan at Boston Ballet Summer Intensive.
Cancer Summary:
I had a followup appointment this week. I have periods where I see my oncologist every 3 weeks. I won't see her again until after my next PET scan which will be sometime next month. My treatment regimen stays the same with Lupron and Faslodex injections, Zometa infusion, and Kisqali orally. For the past six months or so, I've had pain in my heel. I hadn't wanted to deal with it, but I finally asked my oncologist about it and whether she thought it was medication related. She didn't think so. She suggested I get in with a podiatrist so I called and made an appointment with my primary care physician. It turns out I have calcification of my Achilles tendon. It hurts almost all the time when I first stand up and walk. It doesn't always hurt a lot when I am walking but I also think I've compensated without knowing it. I'm on some more meds (yay) to help with pain and discomfort and to decrease the inflammation. I have an appointment with a podiatrist in a week and the doctor put in a referral for physical therapy.
This is one of the best cakes I've ever tasted. It's a gluten free one from a bakery called Flour Bakery in the Boston area.
Final Summary:
It's been an interesting week being off social media. I feel disconnected from all my friends and it's a bit lonely but I've read a lot and am feeling peace. I'm by no means completely at peace, but am getting there. I needed to disconnect. I've prayed quite a bit for y'all. I miss hearing about what's going on in your lives. Drop me a line via Facebook messenger or my email which is txballetmom@gmail.com. My love to y'all. Have a great rest of the weekend.
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I have several places online where my life story is told. They're all in bits and pieces and for the most part not well written. Writing is not my forte and never has been. Give me a good old math problem to solve and I'm happiest.
I am an open book. On Facebook, I put out most of my business. It's quick and easy. And, (I'm about to get morbid and sad) I know I won't be around for a lot of time. I'm hoping and praying for many, many years but you know, metastatic cancer. Anyway, I have hopes that in the future when I am gone, my children will look at memories from Facebook and smile at them. Even the bad ones. I hope they see the good, the bad, the ugly and the beautiful that was our lives together. I hope they remember them and know "wow, it sucked during that time, but man, we sure came out stronger". Or, "wow, we had such a good time then". I hate that my openness has allowed people to steal some of the peace I had been feeling. I trusted that people who I thought were friends would be able to keep my stuff to themselves. Turns out I was wrong. I went and restricted any and everyone except for a couple of people who might know me in real life and know the people who have given me grief this past year.
I don't write this to make anyone sad. Don't be! Life is good. Not yet very peaceful but man, it's good.
I'm going to take a break from social media. For now. I don't know how long. I just know that I need to take a break. It's hard because it's my go to whenever I'm waiting somewhere and I do a LOT of waiting. Know that I'm praying for you and will probably update via this blog. I hope.
And, because I always like to add photos to my blog, here's one:
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