Wishes, Dreams and Realities

The Future

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.

Cheers to the miles it took to get here.

cheers tattoo

In order to tell my story, I have to start where all stories begin, at the beginning. My mother and father raised me in a suburb of Cleveland, Ohio and I was an only child. I had a happy childhood for the most part, barring my childish tantrums when I didn’t get my way. But I never had to worry about not having a roof over my head or food in my belly. We weren’t rich, but we were comfortable. Life was good. But as it always does, the good comes with the bad. I was teased from time to time over the years, which would often send me home in tears or in a rage where I would scream into my pillow, but it was manageable until the eighth grade.

At this point in my life, I had become the ultimate target for bullies. I had glasses, curly hair and this year I got braces. I heard all of the unoriginal insults, ‘Four-Eyes’, ‘Metal-Mouth’, ‘Brillo Head’, and so on and so forth. The constant onslaught hurt, but I was managing until I started to be sexually harassed by a classmate. It never went past just comments, but the words hurt. All of a sudden, my torment had taken on a new element that I didn’t understand and without understanding, I couldn’t process it, couldn’t handle it anymore. So in the middle of eighth grade I started cutting. Small incisions on my legs, the insides of my thighs, the undersides of my arms. Never deep enough to scar, but always enough to bleed. I started wearing long sleeves and becoming socially withdrawn. Shortly after, I was diagnosed with depression and was started on an anti-depressant. But the taunting at school continued and the pills didn’t help, so the cutting continued. It was the only thing I could control when it seemed that everything was spilling out of my hands. I could control how much I cut and how often and how deep. I could even control if anyone noticed. I got really good at hiding it. I became an expert at faking emotions because I had begun to feel numb inside.

The depression and cutting continued through high school and into college, where I went away from home for the first time. I cut when I faced new situations that I was afraid of, I cut when I was tired, I cut when I was hurt, I cut when I was angry, and I cut when I was numb. In my freshman year of college, my roommates caught me cutting and called my parents. Between the parents and my roommates, I was convinced that it was time for me to get help. I had been cutting for almost seven years at this point. I found a wonderful therapist on campus that helped me slow the cutting and begin to build up my own self-esteem. The cutting didn’t stop completely that year, but it got better. I came to rely on that razor blade less and less. By the end of the school year, I had come to rely on myself enough to realize that moving back home would be my best option.

I moved home, found a new therapist, and continued dealing with the anxiety and depression without using cutting as an escape. I finally found an anti-anxiety/anti-depression medication that helped regulate my moods, and helped me deal with life a little better. I finally stopped cutting completely by the middle of my sophomore year of college. Things were finally looking up. I was hanging out with friends again, becoming more sociable, my grades were improving, and I was happy with where my path in life was taking me. Unfortunately, the medications aren’t perfect, and I started building up a tolerance for it, so my doctor and I had to increase my dosage a few times until I graduated college. During that time, my moods would spike and drop randomly, like a heartbeat. I had super highs and extreme lows. But I finally graduated with a Major in Business Administration and Management in August of 2012. The economy, as you know, has been swirling down the toilet for a while, so when I graduated I was unable to obtain a full time job in my field. I wanted to get into HR. I could only find part-time work at $9.00 an hour. I couldn’t even pay my bills on that. I finally lucked into my dream department with a customer service job, but it required me to move to Dallas, Texas.

So in February of 2013, I moved a little over 1,200 miles away from everything I had ever known to stay with my aunt and uncle for three months until I had saved up enough to get my own apartment. And on May 1, 2013, I was able to move into my own place. I was so proud of myself. Up until that point, I had had my parents help all my life whenever anything would go wrong. But this time, I had made the move, gotten the job, paid for the apartment and all of the furnishings all on my own. I paid all my own bills and didn’t have to rely on my parents for a single thing. It was both thrilling and frightening. I finally felt like a real adult. I even had health insurance of my own! I didn’t know what to do with myself!

My parents made the drive down to come to visit me in the summer of that year and brought along my four pound Yorkie-mix, Charlie to live with me. I was so happy to be independent, my parents were proud of me, and I had my dog with me.  I had left my boyfriend of over three years back in Cleveland, but we were doing the long distance thing until he could move down to live with me. Life was good again. Until I began to get sick in October of 2013.

At the beginning of October I got what doctors diagnosed as a sinus infection. But this was unlike any other sinus infection I had ever had. Now, I have had asthma and allergies since birth, so I am very familiar with all kinds of respiratory infections and sinus infections. This one came with blurred vision, dizzy spells that would make my knees give out, and severe migraines. After I finished the first round of antibiotics and steroids, I went back to my doctor because I wasn’t feeling any better. I got a second round of drugs to fight the infection. At the end of this round of drugs I was still sick and I had a migraine so bad that I ended up in the Emergency Room. I got a third round of antibiotics and an CT Scan of my head where doctors said I had a really bad sinus infection. No shit, Sherlock. Finally, after seven weeks and three rounds of drugs the sinus infection cleared up, but the migraines, blurred vision and dizzy spells continued.

After the first of the new year, I was sent to see a neurologist. She ordered a spinal tap, diagnosed with me with Intracranial Hypertension, gave me medication and sent me on my way. The meds didn’t help resolve any of the symptoms and they just kept increasing in frequency and intensity. I tried talking to my neurologist, but she kept telling me the medication hadn’t kicked in yet. After five months of that nonsense, I finally went to see another neurologist that had been recommended to me by a co-worker. After another spinal tap in June that went horribly wrong and resulted in 5 trips to the emergency room in 6 days and then a three day admittance, it was determined that I did not  have intracranial hypertension, but there was no known reason as to why I was having as many as 6 migraines a day. My new doctor believes that I had gotten into a migraine loop, which she got me out of during my three day stay at the hospital. My boyfriend moved in shortly thereafter to take care of me.

I could finally function, but still had the blurred vision and dizzy spells. We tried new medicines and new therapies for months, but nothing seemed to work. In October of 2014, a full year after I had begun getting sick, my boyfriend and I discovered that our air conditioning vent was completely filled with mold, because he had begun getting sick, causing him to lose his job. We got the mold cleaned out and a new air conditioning unit installed, and my boyfriend began to get better. I however began to get worse. I was getting night sweats, severe fatigue and no appetite. I dropped about ten pounds in two weeks. I went to the doctor thinking I had mononucleosis for a second time (the first being in high school) but he thought it was a sinus infection. Again. After I insisted that he do blood work for me, he called me three days later insisting I get a follow up with an oncologist as soon as possible. My platelet count was extremely elevated.

After more testing and meeting with the oncologist, it was determined that I have a Myeloproliferative Neoplasm called Essential Thrombocythemia. It is a rare blood cancer, usually occurring in women over the age of 55, that is often called a chronic form of leukemia. I was told that it is not curable, but it is treatable. Cue the depression.

cancer

I started hearing all these big words I didn’t understand and didn’t want to understand. I couldn’t function for a few days. I was like a zombie. They started me on oral chemotherapy pill that caused more problems and I was miserable. I was cranky and felt like no one could understand. I felt all alone in a room full of people. After about two month of wallowing, waiting for the chemotherapy to work, and being terrified of every new ache and pain in my body, I have decided not to let this stop me.

I am not dead. I am not dying. I have overcome a lot to get where I am today. I have accomplished a lot that I am proud of. Just because I have cancer does not mean I am any different. I have not changed. I struggled to get to where I am, and without those struggles, it wouldn’t taste quite as sweet when I get what I work for. I will continue to work for what I want. I won’t let this slow me down or hold me back. My future isn’t gone, and it doesn’t look bleak. It’s so bright, I should wear shades. My life isn’t over. It’s just starting. But with the new outlook that a cancer diagnosis gave me, that everything is beautiful, I see that I have everything to work for, everything to fight for. Cheers to the miles it took me to get here. It has been worth it.