The exception: My life.

My family has always said that we are the one’s that people say, “I’ve never seen that before”. Not for good reasons typically. I’m living proof.

To shorten it up:

By 17-18, starting in my senior year of high school and went on into my freshman year of college, I had severe pain on my left hand side. I went to see endless amount of doctors. No one could diagnose anything. I received an ultrasound and the doctor said it is a cyst. She then put me on birth control. Not that I needed that anyways. But I took it hoping to help. It didn’t. Pain got worse and I was throwing up on occasion. One day specifically, I couldn’t eat anything and was running to the bathroom any time I moved probably about every 10-15 minutes. Too bad the bathroom was on the next floor. I gave up near the end and was throwing up blood into a towel. I had nothing left. I “slept” in a fetal position on the couch and waited for either my brother or sister to wake up and take me to the hospital. My sister took me and I was diagnosed with a kidney infection.

It took many months after to see a specialist and finally I was diagnosed accurately. I had a decent size kidney stone that required surgery, lithotripsy. I needed it twice done to break up the stone. And was supposed to monitor it after to see what may have caused it. Unfortunately, I failed to do so and I didn’t have another case for many years after until my first pregnancy at age 27. I know that pain very well. This time, it didn’t require surgery.

By age 24, I found to be gaining weight, throwing up and swollen. Eventually by my boyfriend’s pleas I went to see a doctor, even though we couldn’t pay for it at the time. I found a doctor that could take me, a woman’s clinic. My mistake. I had an internal ultrasound done with a big screen monitor to see. I saw nothing. The doctor comes in and looks puzzled. As the nurse moved it, he said, “Yes, I see the heartbeat.” Congratulated us and gave my boyfriend and I light up pens. Very nice pens. Bad doctor. Costing us over $400.

Something still didn’t seem right. I ended up in the hospital. I gave a urine sample, which came back with a positive for pregnancy and I received another internal ultrasound. After a while, I asked if everything okay. She looked at me and said “I can’t find the baby.” My heart sank. I got more scans done and they found a cluster of grape-like objects, meaning a molar pregnancy. They said normally it’s benign and rarely cancerous. They admitted me right then and there to have a D&C the next morning. The molar pregnancy was benign.

I went on to be monitored by my doctor until my HCG levels went back down to 0. But at the time I was not on a health plan or employed. So money was tighter. My numbers went low, but never saw them at 0. They may have gone back to normal. Who knows. I just kept bleeding, which was normal. I was passing these grape-like objects on occasion. Sometimes as big as a squid (sorry to sound graphic). The bleeding didn’t seem to ever want to end. During the time I was hired at a big retail store. My manager knew and was understanding with my situation. Thankfully. But the day came where it finally stopped bleeding I thought I was healed. Oh was I wrong.

By age 25 My boyfriend proposed to me! Within a month I was experiencing similar problems as the last time. I took a test, it came back positive. I scheduled a doctors appointment right away. It was deja vu all over again. I had an ultrasound and they couldn’t find the baby. I wanted to cry. I knew what was coming. The doctor came in, looked at it and actually knew what it was, molar pregnancy (round 2). She told me to go right away to the hospital. I did. The hospital wouldn’t do another D&C because of where it was located. They referred me to a specialist. My boyfriend and I saw him. I remember sitting on the medical “bed” and he took one look and said it’s cancer. I broke down. I wasn’t expecting to hear that, especially with the visit so short. Or my age. I lost it. I felt broken. But I followed the doctors instructions. I went back to the hospital to get my port surgically placed. It was official, I had choriocarcinoma Stage III. It already spread to other places, like my lungs. Next step was to my brain.

It went on from there. Chemo treatments started and by week 4, my hair was falling out. My boyfriend took me to a nice wig shop that specialized in cancer patients. They were very understanding. But at the time I wore a hat, still had hair, but it was getting very thin. I took off my hat reluctantly to try a wig on. I wanted to cry seeing how I looked without my hat. But I tried to hold. The wig was on and my boyfriend didn’t care about the price, but I did. I found a cheaper, but still nice wig and he bought it right then and there. But seriously, wig are hot. Very hot. And sometimes itchy. Small price to pay. I wore that wig for a while. My boyfriend’s family friend’s mother also underwent chemo and thinned out her hair. She already finished and gave me her wigs to use. It was one of the sweetest times. I used one wig up until the end, it looked the most like my hair. Not long after, I decided to shave my head. Why prolong the inevitable?

I had chemo treatments for 4 months down in Miami, until my insurance my family kept me on wouldn’t allow me to continue there. I was forced to go to Orlando. Worst hospital ever. I would drive the morning of treatment from Miami to Orlando and once treatment was over, usually two days, I would drive back down. I do not codon what I did. But I knew what I had to do. That hospital would have me on the schedule and tell me there were no beds available. I waited one day in my car in the parking lot for 7 hours until something was available. They knew it and didn’t care. One my one day treatments, I was in a chair for 9 hours. First in, last to leave. The nurses would even forget about me. My doctor put me on stronger chemo and found out that it may cause hearing loss. He knew I was born deaf in my right ear and never mentioned the side affects.

My “wonderful” doctor kept pushing a hysterectomy because it was the easiest and fastest. He had horrible bedside manners. I’m sorry, but if I’m laughing and trying to keep the mood light, DO NOT make me feel bad for that. I was the one with cancer, not HIM. I’ll never forget my last visit with him. Up until then, I knew the routine of these checkups, but this one was different. There was a nurse off to the side and he was checking my stomach. But this time he did things completely different. He stuck his finger in a different area, lower, and I was shocked and looked at him to see him smiling. I will never forget that creepy smile of his. He never addressed what he did, nor gave me a heads up or why. I got out of there as fast as I could. I never wanted to see him or that smile again. He did give me one good news, I was officially in remission, but was still on the schedule for one last 9 hour treatment. I never went.

At age 27 my fiance and I got married. I was told by every doctor, I would never bear children. He still wanted to marry me, even knowing he wanted children and I wouldn’t be able to give that to him. Well mind over body and *POOF*, I found myself pregnant. Here we go ago… I went to a doctor and finally I got the news I have been dreaming of: they see a baby! But because I had a molar pregnancy, I was on high risk. I saw doctors regularly and a beautiful baby girl was born. She’s my miracle.

Age 30, I missed my period. I wish it would be a more joyous experience, but I always have that bad thought in the back of my mind. I saw the doctor again. This time, he wasn’t saying anything. My heart started racing expecting the horrible news. But he was able to find our newest bundle of joy!

It’s been a real roller coaster. I have a lot to add to my life resume. The thing I wish I did was give back more to the cancer community. So I decided to at least do one thing for now. I haven’t cut or colored my hair since remission, it’s been 3 years. I may wait a little while longer, but this year or on my remission date next year, I will donate my hair. I know firsthand what that was like, and having a wig does help. Making someone feel a little more normal in a horrible situation, would mean everything to me.

Unfortunately for me cancer took one thing from me. It took my memory. It’s hard for me to remember much. I don’t feel like the same person as before. Yes, I’m stronger, but I know my memory has been wiped for the most part. I build new memories, that is the only thing I can do. Well, that, and take photos. Lots of photos!

 

MIA Too many times

Well this year and last has had its highs and lows. One year of remission, got married, attended two other weddings (my brother and sister), took a training class in Oklahoma City, found out I was pregnant and much more of course. Kept it a secret during the last wedding (my brothers). They say not to say anything until you get past the two month mark (anything can happen), but I wouldn’t want to take away from anyone’s day. That is just not me. So aside from my husband and his family and my father, no one else knew. The weekend after I announced it.

My sister was the one that was extremely thrilled for me. I finally got a positive reaction from a family member. I honestly cried tears of happiness. Considering none of my family acknowledged my wedding/marriage. We got married at the court house. My father and sister were the only ones to say congrats. My uncle from my fathers side were the only ones to give us a card (and had a little gift). I wanted to cry seeing that.

The longer I stay in this city with my family and their spouses/extended families, the more my family looks more like strangers. I’m starting to not know how to act around them anymore. I’m constantly lied to or my family is excluded from events, like my brothers gender reveal party. Everyone was invited, and told to not say anything to me. The day of their party (Sunday), I came into the office to clean and work. My father was there and wanted to show me his new car. I sat in it and looked in the backseat to find gift bags/presents. I asked who those were for and he said my aunts birthday. I also asked what he was up to for the rest of the day, he said he was meeting up with my aunt and uncle later. Didn’t even address the party. I came home to continue cleaning. My husband went on his Instagram to see videos and photos my brother’s wife posted. I looked at it from mine. I heard and saw every family member of mine there. My brother’s wife received a notification that I had viewed it. An hour later she liked my last photo…

My brother had yet to address it and his wife ignores it. I know my family sweeps things under the rug and we shouldn’t, I know. BUT if you are not blood, you do not get the privileged of doing that in our family. To do that, dues need to be paid. I know I have paid mine.

So now my brother’s wife works here and they both are literally a wall away from me. I hate coming into work more than ever. The rule here at this family office was no spouses are allowed to work here. My husband needed a job after moving to this city for my family, my father wouldn’t hire him. He continues to not hire him even when he offered to fix his roof leak for free. Now she works here until she gives birth and I get to hear how happy my own mother is for her. Helping to plan her baby shower. And see how happy she gets to be during her pregnancy.

Call me bitter. But I worked for everything in my life, as oppose to my brother. He lives in a house that my parents gave the siblings as a starter home. Lives on the water, has a kayak, gets all renovations paid for by my parents. My parents also paid for his seawall to be replaced. I know that cost $23,000. While my brother just pays $600/month for rent. My sister traded her car for my mom’s BMW, my brother traded his car for my father’s Audi. Which my father lied to me about why they have them. And my siblings have all used the Subaru car that was only purchased because I had cancer and my mother would drive down to Miami to see me sometimes. I have had so many car problems, and not once offered that car. They just say, why can’t your husband take you. We needed the money and he couldn’t miss his own work.

I worked my butt off to get the things I have in my life. I beat cancer, purchased my own house with my husband. Dealt with a lemon car in court vs. Lexus. Lost. Bought a new car and had to finance. Out-casted by my family. Went through my entire pregnancy without full support.

My pregnancy was hard. The day I told my mother. She cried and said how are you going to take care of it, when you can’t take care of yourself? Knife to the heart. I came back that Monday to find a note on my desk from my mother. It said, she no longer works here and to do my own shredding. I asked my father what she was doing for the last two days. He didn’t know. I found out my answer that week. She looked herself in the house and took garbage bags to my room. Everything I had in there was taken out to the garage. I was told to pick my stuff up or it would be donated or thrown out. My heart was broken. Let me remind you, I am almost 30 and I feel like I am being treated like if I was 16 and pregnant. But I got my stuff, or as much as I could. I went through the boxes. I just lost it. I broke down. My childhood was in those boxes. That is a memory that has been burned into my head and heart. I promised to my future child/children, I would never do that to them.

My husband gets overwhelmed with the amount of things I have and boxes I have brought to our house, he knew the story and how hurt I was, and welcomed me in the driveway to help me unload.

My sister threw a baby shower for me. I was supposed to have two (one for Billy’s family) and more of my friends were supposed to go to that one. But due to unfortunate events, that one didn’t happen. So the friends that were supposed to go to the Miami one, were invited (too late) for my sisters one. Only two friends were said they would come. It was mostly my brother’s wife’s family and my grandmother. My mother did not want to attend and wanted nothing to do with me and my future daughter. She has yet to say congrats, acknowledge her or want to meet the baby.

I didn’t have my mother during my pregnancy. No one to ask personal questions to or family history or comfort. Nothing. She did come back to work when I took maternity leave. (The non-family employees were told she stopped working because my grandmother needed her.) I wonder if they actually added up the events. It didn’t make sense. It bothers me, it made her sound saint-like than the real reason.

So now I get to hear about how my mother booked the venue for my brother’s wife’s baby shower. Hearing she thought it would be perfect to monogram the paper napkins. Seeing the centerpieces she bought for giveaways.

I am just heartbroken when it comes to my own family.

The only thing that makes everything worth it is my family. Looking into my daughters eyes. I just want her happy and healthy and to never treat her like I was treated by my own family, my own mother. I vow to give her the best life I can for her.

I just think it’s getting closer to leave this city. There really isn’t anything left. Nothing worth staying for.

On a side and happier note, I came up with some designs for tshirts, please check them out. I’ve been dying to give something back to fighting cancer. The “Mind Over Body” shirts are available. 50% of proceeds go towards St. Judes. And get free shipping with code FREESHIP29. I really want to give back, but I need help. Help support the cause.

Follow the link: https://teespring.com/stores/daring-designs

Maybe it’s me.

Some days I wonder, is it me?

What I’m talking about is that I seem to always be against my family or it feels the other way around.

My family wants to live up to an unrealistic perfect world, but once we seem to achieve that standard, my mother, grandmother or  sister has to start finding some kind of flaw. It usually is me. I have accepted I am the black sheep of my family. I guess my cousin (on my mom’s side) was right, her and I fit that mold.

I no matter what I do or what happens to me, I am always fighting some battle with my family. Since high school, they started trying to control my life more and more. Banning me from certain areas, telling me who I can and can’t hangout with and causing me to be more bullied in high school when they tried to help. I’ll admit I was a wild child, compared to my siblings, but I may have gone to parties, but I never did drugs nor did my friends. Some friends, my mother considered beneath me, hence the banning of them. And I had extra family problems in high school than my brother and sister dealt with since they went off to college. My dad tried to shield and protect me as much as he could, but I won’t go into detail more than that.

My sister and brother will never understand what I went through back then. And I don’t expect them to. But no matter what, they never have stood up for me. My brother used to belittle me and I finally stood up for myself, he stopped. Now he seems to be back at it again.

I know no one is perfect, especially me. And I can forgive. The chemo brain is making me forget things more easily fortunately and unfortunately. It even seems to be getting worse day by day.

There is one thing I cannot forgive or forget. That’s no one visiting me. My mom would visit and we would get into fights over who I wanted to visit me, my fiance. I almost think the cancer was easier to fight than her.

Because my parents had insurance on me through their business that I didn’t know about, it overruled mine and they brainwashed me into thinking I would be in debt if I stayed with mine. I had no choice, if I wanted to continue to get chemo, to go to Orlando. So every week I would wake up at 4am to drive to Orlando from Miami and wait in the car or hospital or sleeping in the waiting room chair. There was a time I was turned away  because they did not have any beds, even though they scheduled me for those days. Another time, I waited in my car for 8 hours until I moved to the waiting room chair to sleep with my luggage around me. My mom did come help me that day. One of the times my dad did stay with me the whole day/night. He saw how bad the treatment was, I wouldn’t get chemo until 9-10pm. He helped me by complaining to the head manager of the Orlando Hospital.

After I would get released, I wouldn’t stay the night at my parents house, even though they were only 45 minutes from the hospital. Not until they accepted my choices, accepted me, accepted my fiance. I would drive as soon as I left. Note: I am not proud of driving nor do I condone driving after chemotherapy. Especially a 4 1/2-5 hour drive. I did that from the mid December to April. My fiance would come to see me when he could. He offered to take off just to drive me there even, but I declined every time.

I got engaged literally a month before I was diagnosed and postponed all events/planning. My mom told me that the siblings and my dad couldn’t visit me because they had to work and were so busy with it. I believed my dad was and I understood that it was still a far drive for everyone to make to Miami, everyone made it down the first time. And my parents blamed my fiance for giving me cancer. Telling him my blood was on his hands. He just came to surprise me and they waited until I was in the shower to say their true feelings. I didn’t know he came until after I got out and dressed with the “cancer stick” (IV/chemo bags) attached to me. I’m sorry, but you cannot blame someone else for giving someone cancer. It’s not contagious. (Maybe if it was lung cancer from second hand smoke, but even then.) It’s wrong.

Every other week I would be in the hospital for 3 days, moving treatment to Orlando made my one day stays over 9 hours long. I would be the first one in and the last one out. But again, no one could find any time to visit me even for a little. Or call. Or text. The only other time my sister visited me since was in Orlando the second to last week of March. She was only driving to see me because she had extra time while she waited for her fiance to get off work and drive up. They signed up for a Disney run the next day. It was just convenient for her I guess. And knowing it was my last treatment the weekend after, I knew my brother was planning on going. Call it a gut feeling, but I was right. So I texted him that night saying I wasn’t going to be there and was feeling ill. (I knew if you were feeling sick/under the weather, they wouldn’t give you chemo). I told him I would go to the Miami hospital if I felt worse, but couldn’t do the Orlando drive. Well even though he accepted the answer, he still had to go to the hospital and called me, left me a voicemail, making me feel terrible for not telling anyone at the hospital (even though, they barely knew me and that I came every other week for months, they would literally forget I was still there at lunch and near the end of the day). I tried to call and leave them a message about my absence. No one called me at all. I don’t think until the next day or two.

I knew what my siblings were doing. They knew they didn’t do that much to show they cared. Yes, they would call every now and then, but it would usually be after treatment. The hospital would pump me with loads of fluids to flush the chemo out, for like a 250 lb person. I was 100 lb, I would be up 3 sizes when discharged, my face would be swollen (worse than when I had my wisdom teeth removed), it would hurt to swallow and to talk. I wouldn’t want to talk to anyone. I was miserable. I would only text. They claimed I came off like I didn’t want to talk to anyone, aka my family. If only they knew what I was really going through. They also claimed that once I went to Orlando, I wouldn’t tell anyone my appointments, no one knew. Except my mom. My sister did tell me, my mom would call the hospital to find out when I was supposed to come in. If she knew she did that, there was no excuse to not knowing. She could’ve asked her or known she left for a day or two.

They both were too busy “working”, meaning they were too busy getting engaged, flying to New York, dress shopping, bridal events and driving to Savannah for venues. I asked

I came back to work for the family business and mend things. But things are worse than ever. I boycott family events because they invite my brothers fiance and her family, along with my sisters fiance and his family. They never met my sisters fiance’s family, but once they came to visit, my parents through a welcome party for them. My fiance’s family have yet to be invited to anything. Even of the passing of his father.

One time I was in Orlando getting chemo and my mom texted me to tell my sister to pick a different Maid of Honor because I wasn’t fulfilling the duty. It’s been all about my sister’s wedding since. Planning things and trips, while I laid in a hospital bed with my hair falling out until I was balled. I asked my dad if I could get a wig, the hospital wig shop wasn’t open then, so I asked for some money for it. He said my mom wanted to be there for it. My fiance took me to a wig shop and bought what he could afford (since I had no money). He told me I could get any wig I wanted, no matter the price. He would find a way to pay for it.

While working here, I said something to my sister that needed to be said. I said you know you might have had to keep your backup Maid of Honor. I might not have been around. Instead of planning a wedding, it might have been planning a funeral. She replied, we knew you’d beat it. How…how can someone know you can beat cancer when it has taken the lives of so many. You don’t know.

This is my first New Year’s cancer free since. I’m going into the new year healthy. I cannot believe I would be thinking those words. It’s crazy to think where I was a year ago. We had one day off for Christmas and have one day off for New Years. I was planning on going down to Miami for my fiance’s family. I requested time off for two days (to also sell my car before the end of the year for the best deal and before my car continues to depreciate). My dad approved, even though he was hoping I would stay for the whole week. My sister left the states for her fiance’s friends wedding and only worked one day this week and won’t be back till the new year. Another employee left for IL last week and won’t be back till the new year. My parents are driving to GA and won’t be back till the new year. Who knows what my brother and the other two employees plans are. I filled that form out yesterday, but by the end of the day my mom called blowing up that I didn’t deserve any days off. That she is cancelling the GA trip if I take off. I love my dad, I didn’t want to cause him more problems. So I decided to cancel my plans and save his. Guess I’ll be stuck with my crappy car for a while longer. I ripped up the approval form in front of my dad. My brother sided with my mom, of course. But he is the one who leaves early all the time to get his hair cut once every two weeks at least and leaves for a few hours, if you ask him where he’s going he either ignores you or mumbles something as he is leaving. I know how my mom is and she cancels holidays (it was usually Easter) if things aren’t fully her way. So my plans are ruined and my fiance is miserable. He thinks I bend over backwards for everyone in my family when most treat me terribly. That is just how my family functions. Things do need to change for the new year. I will be putting him, us and our life first. I will stand up for myself and us. I promised myself that cancer made me stronger and I feel like my family is trying to beat me down to nothing. But like cancer, I refuse to give in.

 

New year. New me.

xO