maggie strong.

Archive for the month “May, 2013”

my new normal.

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Sometimes I try to look back at my life before cancer, and it’s kind of shocking that I can’t remember what it was like. 28 years is suddenly erased by one word. I feel like I’m still in shock, and that my “memories” will come flooding back moment by moment. I’ve had one hell of a life to just forget. I will remember.

I had 2 incredibly hard and confusing yet peaceful decisions to make this week. I chose to not freeze my eggs before chemotherapy. These past few days have been full of tears, dreams, confusion, anger and every other emotion that I don’t even know how to describe. Basically, I can tell you that I want so desperately to be a mother and to have a child, but even more I want to save my life. I had the most amazing advice from my loved ones, but the most amazing advice was my own. I can’t explain the exact moment that I chose this, but I decided that I need to be selfish and put myself first. After the haze of my diagnosis, I promised myself that I would put 150% of myself into this, that I would do anything and everything that I can to fight for my life. My future is going to be hard, scary and mostly unknown. I have 1 job right now and that is to get healthy. I not only want to focus on myself but I need to, I’m the only one counting on me, I’m counting on myself, and I owe it to myself. I feel so close with Nate after this decision and that our relationship has continue to strengthen more than we both thought possible. We still would like to try to have a child naturally, after treatment, and Dr. Drappatz said again yesterday that is still a chance that that could happen. Nate and I were never opposed to adoption, and in fact, I feel like it is an amazing option. I may have health problems of my own, but how beautiful would it be to bring a child, possibly scared or alone, into a loving family that they might otherwise never had? I feel in my heart and soul that we both have so much love to give.

I also met with Dr. Drappatz yesterday about my treatment options. After questions, contemplating and quite a bit of time, I decided to start a treatment of chemotherapy and radiation. My mom said that whatever my choice was, I couldn’t second guess it. I can say that we, I, made the right decision. Next Friday I have an appointment with Dr. Schocker in Altoona, he will be the doctor completing my radiation. I’ll be having a consultation with him about what to expect, and I’ll be making a lot of notes for my big fat binder of “cancer goodies”. I told Nate the other day that if I have to do this, I might as well make it fun! And by fun, I meant Post-Its, highlighters, binders, sticky notes, a 3-whole punch, etc. I don’t know if he was confused, shocked, embarrassed or all  3. I met with a Dietitian yesterday and I squealed with happiness over the book she gave me, I told her I love taking notes and organizing information, again she probably thinks I’m crazy. When I was younger, my mom used to take me to Wal-Mart for my birthday and let me pick out whatever I wanted from the paper supply aisle. What was better than Lisa Frank stationary to a 5th grader? It is ironic that we probably don’t have 1 pen or pencil in our house right now. Oh, the little things! Dr. Schocker will make a mask that I will use during each treatment of radiation. Because the mask will be custom and will be used to pinpoint the spot of my tumor each treatment, it will take about 2 weeks to be made, then treatment can begin. I will see Dr. Schocker about 1 hour every day, Monday through Friday, for 6 weeks. They told me that I could possibly lose a patch of hair on the spot where my tumor is, but I should be able to comb it over top. My head will be very sensitive most of the summer so it will be important that I use a lot of sunscreen and hats. All I know is that it means that I have to go shopping for some really cute hats, that doesn’t sound too bad. Dr. Drappatz said I should be able to drive to treatment (right now I’m only allowed to drive within of a roughly 5 mile radius), because we live so close, but I will probabaly be very tired and will want to think about having a friend to tag along, AKA my mommy and daddy. They will come to Altoona as often as then can, or as often as I’m not driving them nuts. I love them so deeply. The night before radiation begins, I will start a regimen of 3 chemotherapy pills. I will take 3 pills for 5 days every night, then have 3 weeks off without any pills, begin 3 pills for 5 days then 3 weeks off again. This will continue for 1 year. My chemo has a side effect of nausea, but we are working on a diet and tips to help me daily for the next year to help me to live the most normal life possible. Dr. Drappatz feels confident that I will tolerate both treatments well, and that my cancer will respond well to treatment. He told me as long as I feel good, I can continue to do my normal daily routines, most importantly I can still go to the Bruno Mars concert in July! We all are planning on a lot of picnics, swimming, basketball games, landscaping our new house and so many more things this summer, to be attended by me and with a smile on my face.

This past month has been so crazy, full of questions, waiting and not knowing. Well, we finally have a diagnosis and we finally have a treatment plan. I am so excited and ready to start on my next adventure, if you can call it that. I know now what my routine will be and I can’t wait to organize it all in a new, pretty planner. I feel a sense of peace and calm. Although it will be a tough summer and year, we all are ready to settle down to a new normal, slow down, smile and find happiness again. My doctor continues to be optimistic and my confidence and hope continues to grow each day. 

Although this isn’t the normal I had planned, it is my new normal and I am learning to embrace it. I refuse to let cancer choose my future, it’s time to choose it myself…tall, strong and proudly.

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dreams of love.

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I struggled with writing about this entry. I continue to struggle with it. Fact is, this is my reality.

Along with the terrifying thoughts of having cancer, I also now have to decide if I want to have children or not. Dr. Drappatz told me that one complication of chemo/radiation is infertility. I may never be a mother. Nate may never be a father.

I’m scheduled for an appointment at Magee Women’s Hospital on Wednesday, and will be finding out what options I have for freezing my eggs before treatment begins. Oh, how many questions will come up during this appointment. How does someone decide if they want to have a child or not?

I’ve always wanted to have 4 children, 3 boys and 1 girl. I only wanted 1 girl because I want her to be my princess. I want her to be her daddy’s little girl. I wanted a shopping partner, a little girl to dress up with and braid her hair. I wanted 3 boys that were loud, rough and rowdy. I wanted boys that wrestled in the house, played basketball, played football, skinned their knees and just did everything boys were supposed to do. I wanted to be that mother on the bleachers with her last name printed on the back of my tshirt, so proud and cheering for my child. I wanted to cook dinner every night with my family around the table. I wanted to pick up all of their dirty clothes and lug laundry baskets around. I wanted to wake up in the middle of the night when they were sick. I wanted to look at them and laugh because they look just like me or have their fathers personality. I wanted to be a mother. I still want to be a mother.

Am I selfish to freeze my eggs? The financial burden alone is selfish. Am I selfish to bring a child into a world full of illness and uncertainty? What if I am lucky enough to carry a child, what if my illness caused my own child to be ill? What if I don’t have more than 15 years to live? Am I supposed to have a child who now won’t have a mother? Am I supposed to have a child who may have only a father to care for them? I don’t want a child to grow up only knowing what illness means. Is mommy going to be sick today, or is she going to feel happy? Are people going to judge me? Are people going to say that I’m selfish? Why on earth would she bring a child into this hell of cancer?  Why would she have a child when she’s just going to die?

I’m scared of dying but I’m scared of leaving Nate alone. None of this is fair to him. He didn’t sign up for this. Is he going to be a widow in his 30’s or 40’s, possibly with a child to raise alone? I shouldn’t have to make these decisions, but neither should he.

What if there is a miracle? What if there is a cure for cancer? What if I live to be 90? What if I never had a child, and I live my life full of regret? What if all of my dreams become reality?

I basically have until Wednesday to figure it out. 28 years of dreaming is being dwindled down to days, hours, minutes and 1 decision.

Nate keeps telling me that there are always options for having children, and I absolutely agree. The dream that a woman has to carry a child, to surprise my parents and tell them “I’m pregnant! You’re going to have a grandbaby!”, is just not the same. My parents are possibly being robbed of their dream of being grandparents. My sister is possibly being robbed of the dream of being an aunt, possibly the dream of having a child herself and being a cousin. 

I can’t dream of one child that could ever be more beautiful or loved.

cancer.

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I have cancer.
My beautiful mother is a retired teacher, and I keep thinking about her and the grammar she taught me when I was young. Is cancer supposed to be capitalized with a C, or is it lowercase with a c? I can’t really decide, but I do know that word doesn’t deserve to be proper. I will never use that word with a capital C.

When I showed up to the hospital at 5:00am the morning of my surgery, I was shockingly calm. Nate got Pandora set up for me and I listened to rap music (I know) to pump myself up. I had such a positive attitude and I was ready for this. I didn’t yet speak with my neurosurgeon, Dr. Engh, but I saw him walking through the hall in his scrubs. I felt this incredible sensation of “He’s here! He’s here for me!”. This man was holding my life in his precious hands, and I was so confident in his ability. 

A few hours after my surgery, he had nothing but positive words. He said that he was very happy with my surgery, he did not see any obvious signs of malignancy and my latest CT scan and MRI showed that the tumor was gone. I wasn’t in too much pain the next week and I was trying so hard to stay positive, especially after his encouraging words. I really felt like I was going to be fine.

Two days ago I had an appointment with my surgeon for the results of the pathology tests. He started giving an explanation full of medical terms, when all I wanted to know if I had cancer or not. So I just went for it. “So, do I have cancer?” He shook his head and said, “Yes.”. OH MY GOD. 

I started crying. My dad started crying. My mom starting crying. Nate started crying. He kept talking but I wasn’t listening. I remember crying, but I think only because it’s a natural reaction to news like that. I don’t really even know what was going through my head. I felt Nate’s hand on me during the news, then it was gone. He walked out of the room. I started yelling that “We just bought a house! I’m not even married yet! I haven’t had kids yet! This is a joke!” 

Now that I look back on that, I am pissed. I am mad at Dr. Engh. I am mad that he made me think that I was going to be okay. I am mad that he made me get my hopes up. I am mad that he was the one that said “Yes.”. I hate him. My faith and trust in this man is now gone. My dad said that I have every right to be mad, but he still feels that Dr. Engh did his best. One of the top neurosurgeons in the country is now filled with hate from me. I know I won’t always have these feelings towards him, it’s just going to take time. 

Dr. Drappatz came into the room next. By this point, Nate was back. Dr. Drappatz is German and, just like Dr. Engh, has a confidence but not arrogance about him. He continued to say how my type of cancer is very treatable and it is highly responsive to treatment. Whew, that was a half of a mili-second of relief. Then he said that the average time period that patients with this cancer survive was 15 years. For the second time in a 20 minute period my life just practically ended. I started yelling again, “What’s the point then? I’m 28, what the hell is 15 years going to do?”. I stood up and walked out of the room. My legs were numb, I was sick, my hands were shaking, I was close to physically laying on the ground in the hallway. 

That night, Nate stood in the kitchen with me and held me as I sobbed uncontrollably, they were sounds that I have never heard come out of my mouth. He squeezed me. I love him.

I just keep telling myself that I can’t change this, as much as I want to, I can’t. So now I have to do what I need to do to fight for my life. My world, soul and heart will never, ever be the same. I’m mad about that. I told my dad that I’m too scared to die, so I promised to live. Right now I praise God that I am able to wake up, love and smile.

I am so grateful today.

Piss-itive.

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I’m pissed off. I’m positive.

I’m trying so hard to keep “Why is this happening to me?” and “This isn’t fair” from coming out of my mouth. It’s happening and unfortunately I can’t do anything about it. Where can I find the handbook for handling this? I want to yell, no, scream. I want to cry, which I do often. I want to be healthy, which I will be.

I don’t want to just say that I’m positive, I want to actually mean it, and actually feel it. 

 

Not-so-normal.

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It’s been one week since my normal life became not-so-normal.

Last Thursday, I woke up late as usual. Nate gets a shower after I do so I tried to get ready as quick as I could to avoid the daily “Hurry up, you’re going to make me late for work”. I ironed his clothes and tie and was ready to get him out the door on time. My biggest concern that morning, as usual, was what to take to work for breakfast. Breakfast is a pretty high priority with my co-workers and myself. Hot sauce- everything goes with hot sauce in the morning, atleast we think so.

I was getting dressed and started feeling funny. Nate was ready to walk out the door and I wanted to explain to him how I was feeling. “Frink, frank, frunk.” According to him, that is what came out of my mouth. I knew in my head that I wanted to say “I think something is wrong” and clearly that wasn’t what came out. Probably 10 seconds later I felt good enough to go on with my day, but the only place I wanted to go was the ER, I just knew something was not right.

Nate drove me to the hospital and sat next to me for the 9 hours we were in the ER. He kept telling me I was fine, to be strong and that they would send me home soon. I had a CT Scan that the doctor said there was an area that they needed to look at further, so he ordered an MRI. How uncomforting was that to hear. I had two other MRI’s before and knew what to expect. I felt nervous and uneasy all day, but not overly concerned. After the MRI, I was taken to have an EEG done of my brain. Basically they put this stupid looking cap on my head to measure my brains activity. The test was supposed to last a half hour and about 20 minutes into it, some random doctor came in to the room to tell me that I had a tumor. Wait a minute, who are you first of all?! You tell me in the middle of a test when I’m by myself that I have a tumor, that my whole life is no longer what it used to be. I wanted to punch this bitch in the face and tell her to get out, quit talking and just get out. I had to sit there alone for another 10 minutes processing what I had been told, alone, in a dark room to finish this stupid test. I had tears in my eyes the whole way back to the ER. As soon as I saw Nate, he asked me if I was okay. I started hysterically crying and said “I have a tumor”. He hugged me and I squeezed him. It was the first moment that whole day that he showed any real concern. All I could sob into his hoodie was “I don’t want to die”, over and over. He called my dad to tell him, through tears of his own and the shakiest voice I have ever heard. They didn’t even say goodbye to each other, just hung up. And like that, I was left to take in the absolutely worst news of my entire, young life.

This past week has been like watching a movie, that it is frozen on the tv screen in a horrible, scary spot. You try to rewind it to try to get it back on track, but you just keep replaying the same act over and over, one that you already saw and don’t want to keep watching. I just want to fast forward to the end. I want to fast forward to the credits, and see Dr. Engh’s name next to “Hero”.

My new path.

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Do you have a brain tumor? I do.

May is National Brain Tumor Awareness Month, and I’m celebrating by having surgery to remove an egg sized tumor from behind my left ear. Egg sized…yea, no more eggs for me! I have encountered hard boiled eggs left and right recently, yet I can’t quite comprehend that something that size has actually grown inside of me. I still picture it to only be the size of a plastic bottle cap.

I don’t know if I’m still in shock, in denial or just don’t fully understand what is happening. I would really love to know which of those three options is what I’m actually feeling. It would really, really help me to deal with this. I don’t want to let myself get depressed. I want to be positive. When there is a chance that you could have Brain Cancer, it is so hard to not be depressed and be positive instead.

My life has made one huge wrong turn and I just want so badly to put it in reverse and get back on the path I had been going.

I like to think that my new path is just an extra long journey that one day will connect to the path I had envisioned, and this bumpy, ugly road will be one of my past.

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