I had a bone scan Friday to take another look at what the cancer is doing in my bones. The scan revealed the area in my sacrum that has been the “problem” since the start. It didn’t show the hip or femur lesions. So, that means they are too small to be detected in this kind of scan. It also means there were no new spots – which was reassuring. We didn’t pop any champagne, but we were relieved to not get worse news.
I am still gathering opinions from my doctors. But, the consensus appears to be wait and see. I will have regular blood work drawn over the next 2 months to watch my tumor markers and then I will have another scan in 8 weeks to see if things are progressing. If everything holds steady then I will stay on my current medicine and scan again. “Scan, treat, repeat” I saw this on stage iv tshirt at the conference I went to… now I get it.
So, how do you live between the scans. Focused on each day and the joys before you without thinking about, dreading, anticipating the upcoming scan and the news it brings. One day at a time. Within each day there are moments when cancer doesn’t matter- the middle of a deep stretch in yoga class, watching my son sing in a school performance, dancing in the kitchen as we prepare dinner… Within each day there are moments of joy and there are moments of disbelief and sadness. I live in the moments. Trying not to think about the fear or the “what ifs” This whole messed up reality I am facing is much more manageable in the moments. So, that’s what we are going to do.
The scan will be at the end of June/beginning of July. We are tentatively still planning our summer adventures in Michigan for July. If my scan reveals progression and I have to change treatments or start the clinical trial – we will take the boys to Michigan as planned and then make trips back and forth depending on what i need to do.
We enjoyed a lovely Mother’s Day together – starting with breakfast in bed, beautiful homemade gifts and a new hammock for me to relax in in the back yard (which can also be packed into a small pack and taken with you on a hike and strapped to any tree… so I’ve got plans for this hammock!) Followed by fishing and hiking in the rain and a delicious healthy dinner made by my three boys. It was a great day.
Now, to find more moments like this. To not let another moment slip away between these scans overshadowed by fear or anxiety. Life between the scans is… life!
When I reflect on my true “skills” in life I would rank sleeping at the very top. My whole life I have been a great sleeper. I put my head on the pillow, fall fast asleep and don’t stir until I wake in the morning. I never understood the restlessness people with sleep problems would share.
Now, I get it. I haven’t had a complete nights sleep in months. Over the past several weeks it has gotten progressively worse with 3am wakings that lead to all out panic attacks. Luckily Jay is by my side through it all and I get through the night just as I do each day… moment by moment. Breathing deeply and finding comfort in the arms of others… sometimes a little xanax helps too.
My middle of the night “episodes” seem to be getting under control and I don’t wake in panic anymore. Now I just wake up and think and stare at the ceiling and feel for different aches or pains I fear are cancer… and write. I write to my kids, friends, family. I write about good memories and happy adventures and eventually I fall back asleep wrapped in the happy memories of my life. Unfortunately my writing usually wakes up jay just as much as my panic attacks, but he’s a good sport.
Tomorrow I will have a bone scan. Another test to look at my bones and disease in a different way to help the doctors have a clearer picture of what is going on. So if our track record holds up I am prepared for them to tell me they have found even more cancer. At least I am going into it prepared for the worst and maybe, just maybe we will hear some “good news.” But, I’m not going in planning on the good news like I so confidently did last time. That fall was just too hard. After we have this additional information we will make a decision about treatment. I met with two oncologists this week and both agree that if the bone scan doesn’t show any additional progress we will hold steady on the current drug I am on to make sure it has had enough time to “work.” We will rescan in 8 weeks and see then if there truly is progression or if this drug holds me steady. If the bone scan shows additional growth right now then I believe we will look at a more aggressive change in treatment. But, we haven’t talked specifics, because I haven’t wanted to know yet.
So, I continue to live for the moment. I found myself laughing and enjoying a beautiful evening last night with friends. My friend Dj’s parents had us over for an impromptu dinner and through the conversations of kids, family, summertime plans, etc… I just let go of cancer and enjoyed the evening. It was nice. Despite our continued bad news I am determined to keep trying to live our life – to just be happy in the moment. Not because I am denying cancer but because at that moment cancer didn’t matter. I was not in pain, needing to make a major medical decision, etc… I could just live.
A dear friend and fellow stage iv breast dance survivor, Mary Ann, recently shared this question. If you had 5 minutes to live would you spend one moment being sad? I know I wouldn’t. I would ring out every moment of happiness that I could from those 5 minutes! That is how I am trying to live my life. It isn’t easy – I cry every day. I throw things and I lay on the couch exhausted after several hours of playing with the kids. I feel like I am much more optimistic in this blog then I can be in real life sometimes. But, I do my best.
So, another scan Friday (today I guess now). More waiting and anxiety. However, I told them I didn’t want to know the results until after the weekend. My 3 boys have plans for mothers day- we have a trail to hike, some fish to catch, a picnic to enjoy and I don’t want to have it overshadowed by bad news or trying to figure out treatment plans.
Happy mothers day to all the mama’s out there and to those with angel mama’s. May the love and joy your mother shared with you be celebrated whether you can hug her or just hold her memory close. To all those who are moms – treasure each moment with your babes. Hold them close and don’t take anything for granted. I’m sure our boys are overwhelmed with the amount of hugs I am slinging these days. I basically don’t let them leave or enter a room without a hug. Jay does the same thing with them… I think we all just want to hold each other as much as we can.
On Thursday we learned that my cancer has spread to two new spots in my bones- my femur and hip. Although the PET scan from the week prior showed only the original tumor, an MRI was done to look more closely at the original site and in doing so revealed two small new spots the PET scan didn’t detect. We are crushed. We put a lot of hope in the idea that perhaps this one spot would be all we dealt with for awhile and that we could stop the cancer from spreading. It is bad news that it has spread so quickly and possibly isn’t responding to the current treatment. However, there is also a chance that I haven’t been on the current treatment long enough for it to be making a complete impact. As has been the case since the start – there are several options to try next. None of which are “wrong” nor do we know which one might work. This weekend, however, was the first weekend in May in Louisville and instead of cancer, this weekend was filled with Derby. We welcomed Jay’s parents, Rick and Chris and his brother Erin and his wife, Amy, as had been planned for the past year. It was a hard weekend given the news we had gotten and my overall feeling of despair that I am already progressing in this disease. However, we tried our best to just live each day to the fullest and be thankful and joyful in the day. It was a lifelong dream come true to be at the derby for my mother in law, a lifetime horse lover! Our family was gracious and supportive of how much I could do each day and we all had a nice time. Two full days at Churchill Downs complete with mint juleps, big hats, winning bets and lots of laughter. We also celebrated The James Graham Brown Cancer Center and the work they do at their annual Julep Ball Friday night. I love getting dressed up and I’m not sure which of my three dresses was my favorite! In several moments throughout the weekend I forgot about my cancer and just laughed and cheered and took in the spectacle that is Derby weekend. It was hard to be in such a happy place when I felt so sad. But, that’s how you live with stage IV cancer. One day at a time. Sometimes one moment at a time. Now on this glorious sunny day when I would like to be playing ball with my three boys – I am sitting in my room exhausted and trembling in fear. This week will be filled with doctor appointments and research about clinical trials. We aren’t loosing hope. We know there will be some good news in our future. That something will slow the progression and give us a little more time to live out the adventures and joy we know lies ahead for our family. Enough staring at a computer screen and feeling sad. I am headed out to watch the boys jump on the trampoline and listen to them laugh. We have today. One day at a time. with continued hope, Lara