I’m behind a few weeks:
I am so grateful that I was able to escape to a short, spontaneous vacation to the beach with my family. What a luxury! It felt so freeing to be away from the house that is filled with calendars, which have doctor appointment dates, bottles of medication looming in the kitchen, bathroom and bedside table and although I had to pack the medication, they were in pill boxes and not just staring at me first thing in the morning.
Being at the ocean was just what I needed to refresh and taking a step back from all that is to come for me physically, but just to be able to focus on family time was monumental. I would love to share that being away helped put what is going on with my health out of my mind for a few days, but here is the thing when you have brain cancer, it’s always there; on your mind. As I’m being weaned off of the steroid that has kept a lot of my symptoms at bay began lurking and making their painful presence known, but I did not let it stop me from enjoying myself.
I got to watch a beautiful sunrise with my youngest daughter, a very sacred moment I will cherish always and another view of the sunrise with my kids and my husband the next day that was breathtaking and another cherished and lovely moment. That’s all I will write about this other than I am most grateful of God’s constant reminders that this world is filled with so much beauty and we are so fortunate to see it all around us. We should all stop and smell the roses, watch the sunrise, watch the sunset or watch the clouds and just be grateful and present in those moments whether you have a disease or not.
As I’m coming off of the steroid, today would have been my last day, but with symptoms like constant headache, fatigue, some confusion, every joint in my entire body hurting, and pressure in my ears which results in me being able to hear the blood swooshing in my head, the doctor wants me to stay on and go back up a bit in dosage. I was hoping to be rid of this moon face, back and neck fat for good. Oh, well.
And now it is July 10th:
I’m still practicing yoga daily, enjoying my time with the kids being home for summer break (Parker is my personal chauffeur…..pretty swanky), getting in a few hikes, which I fell down the other day. You can see those ridiculous photos on my Instagram account. I actually didn’t bruise, which is awesome.
I just started my third round of chemo, which went up in dosage last night. I will take that for the next four nights and pray that what remains of the tumor is responding well to that, the radiation, chemo, diet and supplements that I’m taking. I’m also praying that I can continue to tolerate the chemo as my dosage increases.
The past few days, I didn’t feel very well. I had some balance issues, muscle fatigue, felt a bit foggy and like something was squeezing my eyeballs. I also felt very overstimulated as I’m not able to multi-task, and going into stores with bright lights, music playing, and crowds is very overwhelming at times all while trying to walk, talk, and look at my lists. I was able to take a walk with my daughters, yesterday evening.
I’m trying to be very patient with myself as it’s only been five months today since my craniotomy. Wow, how time flies when you’re having fun!!!
I was at Sprout’s the other day and came across this magazine, which I had never heard of before “What Doctor’s Don’t Tell You” and there was an article: How I Beat Brain Cancer. It was in the wrong place and I didn’t see any other copies of it. I purchased it of course and it was such an inspiring story. I am attaching the article below. She does not have the same kind of tumor, but it this woman is a true survivor.
Long term survival for my diagnosis isn’t something you read or hear much about especially if you look at statistics, however, I have noticed that several long term survivors I have read about or follow their stories we seem to have a lot of things in common; a very early acceptance of diagnosis and looking towards a plan of action, a strong family and friends support group, exercise, going about living your daily life as much as possible, diet, supplements, a positive outlook and taking one day at a time. I also feel like I’m being called to serve in some way, having a purpose that has something far greater to do with just what I am going through. Of course, maybe I’m just a narcissist.
If I don’t take things one day at a time, then it all becomes far too overwhelming and then it can take me to a dark place. I told my husband that this is it. Scans, labs, doctor appointments, recurrences, brain surgeries, more chemo, diet, supplements, physical and mental limitations with no end in sight. It will end when I end. When I am no longer alive. But the thing is I want that to be a very, very long time from now so I’m willing to do all of those things including continuing to plan my future because I feel like I sort of put everything on hold and I don’t want to live that way. I’m still going to write future episodes of Dates (The Series), I’m going to keep writing my book, I’m going to plan to take my daughter to college next summer, I’m going to plan to be at every musical performance my little girl is in, I’m going to plan vacations, I’m going to plan to visit my family in Texas, I’m going to plan to clean crap up around my house. Bleh, that just sucked the glamour out of all of it.
This diagnosis is a real bitch, but I refuse to let it turn me into a resentful, ungrateful bitch. I’m grateful for everything and that includes all of the love, support and prayers and each of you.
Here is the article: