I jokingly said to my husband that cancer is a full time job the other day. I got to thinking about that comment and a little joke really wasn’t far off when I considered how much time cancer steals from me whether intentionally or unintentionally each day. I’m sure I won’t remember everything but as I started to come up with all the ways it’s like a job, a blog post was born!
I wake up...with one eye open I remember that yep, it’s not a bad dream...I do have cancer. Damn it! Now let’s see...how are my legs today? Stiff...stiff from 10 rounds of radiation to the femur bones so I move slow. Like most people, I head to the coffee pot as quickly as my poor little legs will take me.
It’s time to get to work...
The Pills...a struggle every morning because I hate pills. I want to live more than I hate pills. There’s the chemo pill, the hormone killer/chemical menopause pill, Vitamin D and Calcium, and my immune booster. I take one pain pill in the evening most nights. I have been told numerous times by different doctors “there is no prize for toughing through the pain” or something like that. I get that, but I’m looking out for my liver! I also recognize that one day I will likely need more and more medicine to be comfortable. I do not want to have a built up tolerance before then. I want to be able to take medicine like I’m taking now as long as possible...I don’t want to take so much now that I need the hard core stuff too soon because at that point I won’t be me anymore. I don’t want to get there any sooner than I need to so thank you doctors, but I’m doing it my way on this one.
Side Effects...I am lucky to be tolerating my medicine quite well and so far it’s doing its job and keeping my cancer stable. I am so dang tired almost all the time. It’s humbling after a life of being able to “pull myself up by my bootstraps” and get it done now matter how tired I felt. Now many of my days consist of a nap because my boot straps are broken. My chemo pill made me lose most of a toenail which is almost grown back in. I cried my eyes out over that toenail. In reality, the toenail was just the straw. Chemo brain is very real. I lose my words often and it’s sometimes embarrassing and frustrating. The weight gain, dry skin...so many stupid things but I’m boring myself now.
The education...oh my heck, there is so much to learn about cancer! It took me 8 months to start this process. It’s overwhelming for one and I try not to let my days be consumed with cancer as much as possible. I am my own best advocate though so I must obtain knowledge. You wouldn’t believe the mistakes that I’ve been fortunate to catch either on my own or by another doctor. It’s rather scary. This could be its own long and boring blog so I will spare you.
Doctor visits...Oncologists, Surgeons, Neuro Surgeons, Radiation Oncologists, MRI’s, PET scans, endless blood draws...blah, blah, blah. It seems I’m always visiting someone. Currently, I’m going everyday for radiation treatments to my T12 vertebrae where a large tumor is trying to make trouble near my spinal cord. It’s a giant pain in the ass but I lay myself up on that table while the big machine whirls around me beeping and I picture the cancer cells dying horrible and fast deaths!
Prioritizing...Not just for doctor appointments but to conserve energy so that I equally spread my time and energy between people. I usually end up spending all mine with family and not because I don’t love my friends. I only have so much energy which can wax and wane from day to day and I never know what it’s going to be like until I’m there. My youngest nieces are 10 and 11 and it’s really important for me to make memories with them. So between them and all the rest of my family which I love spending time with, I don’t always have a lot of gas left in the tank. I hope my medicine continues to make me better so that I have much more to give to both family and friends someday. Socially isn’t the only scheduling issue...spreading my day just right to be able to work for a couple hours in the morning, get myself ready, household chores, dinner, errands...Life goes on and I am happy to have normalcy and carry out these duties on my own but I have to make sure I spread things out so I’m not doing too much in one day or I will pay in pain or severe fatigue.
Medical Bills...Here’s another example of needing to be educated. Holy. Freaking. Cow. The bills...I rarely understand what the hell I’m being billed for. They never make sense and half the time I call, the person on the phone can’t make sense of it either. I spend far too much time on the phone trying to make sense of them all. They just keep showing up in my mailbox so as soon as I think I’ve got it all sorted out….
The mind...The biggest battle is the one that cannot be seen. The one that is mostly hidden, the one that is the hardest to control and is happening every moment that I’m awake simultaneously with everything else. It’s me fighting to stay positive, to not think of things in the way that my mind will go to on it’s own. Mindful to wash my hands of any germs, walking carefully on the bones that will likely break should I slip or fall. I cannot turn it off...I can only fight through it. Simple conversations with people are a reminder of things I’m not able to do any more. Enjoying the moment fully but also tricky mind making me think about how much longer I’ll be able to enjoy things as I do today. It’s a constant stupid battle but luckily the mind is powerful both ways. I am lucky to be aware that it won’t last forever yet unlucky to be aware that it won’t last forever. Always though, it’s a good day to be alive. I fight through, I come back to this always. I’m grateful always yet sad at the same time. So much loss and so much gain. Longing for what was and embracing what is. I am planning to live but also preparing for my death. I feel sad for the things that I cannot do any more. I feel happy for all of the things I’m still able to do. I feel jealous of others. I feel happy to see everyone I love enjoying life because I’m acutely aware of how short it is. I feel guilty for feeling jealous. Thinking I could be some sort of miracle and beat this but reality bites. I still feel lucky. I feel lucky for the life I’ve had and the life I have left. As I straddle this line between life and death, I have so much clarity and so many questions. And it just goes on in this beautiful, ugly circle.
