Lately, I have been struggling to write. It seems I have all of these thoughts and these emotions, but I can’t seem to put them into words. I sit down to write and just stare at the blank page, pen in hand, waiting for inspiration to strike. I can sit for hours and write nothing. It’s agonizing. What do you do when you can’t put your thoughts into words or actions? I tend to sit and stew and worry about them. But I had a realization the other day. I am having difficulty putting my thoughts into words lately because all of my thoughts seem to be about the upcoming future.
Now, the future is scary enough, but as a person with a chronic illness, it can be terrifying to think about the future, because we aren’t always guaranteed one. We could be lucky and have our illness be controlled for the rest of our lives until the day we die when we are old and grey. Or, conversely, we could be a member of the unlucky, and suffer severe symptoms and side effects from drugs that leave our bodies wrung out and we die early in life. Because our days seem to vacillate between one extreme and the other, with us never knowing which end of the spectrum our days may fall on, it is hard to plan for any kind of future because we never know how we are going to feel, if we are going to end up in the hospital, or a coffin.
Lately, my thoughts have centered around my relationship with my boyfriend and our future together. We have been together for five and a half years and I love him with everything I have. We live together and I want to be with him forever. He has been my rock and I am always safe with him. My father just told me recently that my boyfriend asked him for permission to ask me to marry him. But there’s the rub. I have cancer. What guy wants to put up with that? And though I am lucky and do not have to deal with intravenous chemotherapy and radiation, I do take tons of pills each day and I get super cranky when I don’t feel good. I work in a customer service role in Human Resources, so I always have to be pleasant at work, even on my bad days, so my boyfriend bears the brunt of my displeasure at being sick as soon as I get home. I know it isn’t fair to him so I try to temper my reactions, but it’s hard. He says he doesn’t mind, but when someone complains all the time, people eventually get sick of listening.
We have talked about getting married and about having kids over the past few years, but everything in my mind changed with my cancer diagnosis. I found out that having children is next to impossible because it will always be a high risk pregnancy that can result in intrauterine death, pre-eclampsia, eclampsia, stillborn babies and more. I used to have our future all planned out and I could see it clearly in my head. Now, that vision is fuzzy. Currently, I am in the doctor’s office every two weeks for blood work and followups to ensure that I am reacting to the oral chemotherapy correctly. I can’t travel unless I plan far in advance and get approval from my doctors. Thank god for good insurance, because my medicines alone cost close to $15,000 a month without it. With those kinds of bills, how can I save money to buy a house so we can move out of our one bedroom apartment? How could I afford kids? These medications are something I will have to take for the rest of my life.
So now, my wishes and dreams have changed. I have to focus on realities. I no longer want the extravagant wedding. I can’t afford it and honestly, all that I care about is knowing that my boyfriend and I are together. So bye bye white wedding and hello justice of the peace.I may not be able to have kids, so now I am thinking about adoption further down the road or possible surrogacy. I am not for sure planning anything beyond the next year, but I have ideas for how I want the next five years to go. Anything beyond that is blank. It seems morbid to some people, I know. My mother thinks I’m crazy. I can hear her now: “You have to plan for the future, otherwise what will you strive for?” Well mom, how about trying to control my cancer for now? I’ll worry about the future later.
And as crazy as that may seem, I feel almost….well, free. I am living in the moment more than I ever have and not stressing over the future or what other expect of me. I am no longer concerned with how others view my life. It doesn’t matter if anyone else approves of me, except myself. I am not worried about my career, or grad school, or saving tons of money to buy a house. It just isn’t as extremely important anymore. What is important is working to the best of my abilities on good and bad days, in whatever I am doing, whether its work, school, or relationships. All I can do is do my best and worry about getting through today to get to tomorrow. And today is a great day. Its beautiful outside with the sun shining bright and the smell of fresh cut grass. I have a good job, a fantastic boyfriend, a loving family, and great friends. The future is far off. I must admit, I am loving the now.