my life. my now.

It is such a beautiful day! If you love feet of snow, gray skies and cold temperatures, it’s a beautiful day. Everyone else in the world says I’m crazy, but I love it.

I don’t work anymore so I’m incredibly fortunate to be able to stay home during the day. I’ve always loved winter… skiing, snowboarding, sled riding, you name it. Every morning I send Nate off to work and find my spot on the couch, much like Sheldon Cooper and my puppy nephew, Jackson, drink a cup of tea and snuggle up with blankets and my kitty, Ruby. The DVR is usually full of junk (and when I say junk, I mean reality tv that I am obsessed with and Nate ever so politely reminds me “You know this is fake, right?”) and I spend my morning fast forwarding through commercials during the Real Housewives and Teen Mom. This morning I ate a bowl of Cheerios and thought of my Mom. I really don’t think I have ever seen her eat any kind of cereal other than Cheerios. Sorry Mom, that big yellow box has been replaced with Apple Cinnamon Cheerios. I try not to let Ruby drink my leftover milk but a cat will be a cat. I guess my soggy cereal has no interest to her.

So many people, okay everyone, has no shame in sounding off about the snow. And yes, when summer comes and the temperatures are in the 80’s and 90’s, I will complain. I do not like sweating! I used to be hot anywhere and everywhere I went, whether it was summer, fall, winter or spring. Since I’ve started taking chemo, I freeze. I freeze under 8 blankets with the temperature turned up to 80 (no, I’m not kidding). Maybe my fairy summer godmother will grant me a wish of not being hot all summer long.

A couple weeks ago, Nate and I went snow tubing with one of our friends and Nate’s sister and her family. It was a couple hour trip that started out with me wanting to strangle myself in the backseat because of Nate and Derek’s rap music. Every time I see my Oncologist, she asks if I have had any falls. This month I told her yes, I fell twice outside because of the snow and ice. I really didn’t feel that the falls had anything to do with my tumor, more just me being clumsy as all hell. I think I counted 4 falls during our day of tubing. Make my count 5 after I fell down the stairs the other night. We went tubing at a legit ski resort, so my first trip down I was holding on for dear life, dragging my toes in the snow from the top to the bottom of the hill. I was ready to quit after the first run because my beautiful Uggs got ripped to shreds. My nephew, Bowen, and I went down together and it was hilarious. I’m not sure we were the safest two to ride down together. We laughed and screamed the whole way and I was just figuring out how to stop the damn tube. Nate rode together with our younger nephew, Tanner, and the two of them went so fast they slammed against the 1 inch thick barrier. They literally looked like 2 of the happiest 9 and 30 year old kids. Nate and I went down together, my tube got turned around backwards and I’m sure you all can picture in your heads how loud I was laughing and screaming. I have no idea what I looked like or sounded like but I could have cared less. I had so much fun that day that for quite a few hours, I felt normal. No cancer. No seriousness. No doom and gloom. No questions. No worries. The only thing I got out of that day was happiness, laughter, joy, family and memories.

I keep telling Nate that I have no idea what may happen in my future, especially with my physical health. My doctors have placed zero limitations as far as physical activity. If I’m allowed to do something, I need to do it, especially while I am able to. I have no desire whatsoever to go skydiving, but playing in the snow sounds perfectly fine to me.

Other than staying warm with my love bug cat, cancer has actually afforded me many opportunities that otherwise I would have missed out on. My older sister, Abby, lives in North Carolina. My parents are both happily retired and spend many trips south to visit my sister, brother-in-law and their favorite grandpuppy, Jackson. I was able to go with them at Thanksgiving and spend time with them that otherwise would have been spent counting money at a bank for 9 hours. My parents are able to take me to Pittsburgh for all of my appointments and stay overnight for shopping or relaxing. My mom and I are able to plan my wedding at any time on any day. I’ll be able to spend time outside in the summer. I’m just lucky enough to be able to spend time at home taking care of myself. If right now I need a nap after a trip to the grocery store, I’m not so sure a 40+ hour work week is in the cards for me right now.

Everyone may choose to live differently, but I’m choosing to live in the now, and my now is happiness and health.

a different kind of lucky.

I cannot believe it has almost been 10 months since my little brain tumor friend surprised me with an unwelcomed visit. That egg sized, well, bastard… has been vacated.

I had an awake craniotomy, 33 rounds of radiation, weekly blood work since July and continue to receive chemotherapy. My poor body. There is one plus when it comes to cancer: I’ve lost 30lbs. I’ve had awful bouts of nausea. Constipation has been bad enough to make me cry. Sorry, the ugly truth of side effects. I’ve gone a few days without eating and forcing myself to drink water. I’ve had low creatinine levels and had to stop chemo for a time because of low platelets. My memory is crap. My word finding is crap. Half of my head is bald. My arm and hand go numb constantly. My left cheek twitches. I am so lucky! Seriously, if that is all I have had to deal with, I am so lucky.

I’ve had wonderful days, so-so days and down right awful days.

If I fall, I will stand up.

go, go, go.

Keep going. Lord, I could have used a little birdie chirping that into my ear all day long today. 

I woke up so terribly tired from my radiation treatment, and could have literally rolled out of bed because my body sure didn’t want to move. I have been frustrated for the past week dealing with my insurance company and mail order pharmacy who deals with my chemo pill. Having to deal with my insurance not approving my refill, making me switch pharmacies, lack of communication, nearly running out of medication, finding out that my copay for a 5 day supply is the same amount as a 30 day supply, almost being charged twice for my copay, crying in the waiting room at radiation, finding out I am the youngest patient receiving radiation treatment currently, not being approved for copay assistance by 3 different companies because I don’t have the “right type of tumor”, crying while driving which I’m not even supposed to be doing, being sick to my stomach because of my treatments, applying medicated gel to my practically half-bald head due to radiation, begging Nate to come home from work and wasting 2 hours of my time watching a stupid Lifetime movie can really upset someone, considering this all happened within 4 hours this morning. 

If anyone would have told me “This won’t be easy” sure would have told me the truth. This SUCKS. I try so hard to be strong but some days like today, someone is just kicking me in the ass. I may never have an “easy” day again, and that makes me angry. I just want to cry. I really hope I’m not the only person who wants to just throw their arms up into the air and cry, and when I say cry, I mean CRY. 

I love my sister dearly and it breaks my heart that I can’t be there for her like I want to be. She checks on me every day. I usually don’t answer her phone calls or text messages. It’s not fair that I push away one of my biggest supporters. I couldn’t even talk to her on the phone when I was diagnosed with cancer. I didn’t talk to her for days. I still can’t talk to her for days. I don’t even know why. Sometimes I feel like because she lives in North Carolina, she deserves a normal life. I’m glad that she can’t go to appointments with me or see me when I get upset. No one should have to see their sister go through this. In a way I’m shielding her. I just don’t want her to have to see it. One thing I know is that when she comes to Pennsylvania next month to go wedding dress shopping with me, besides my mom, she is the only person I need to be with me. What is more perfect than having your big sister watch you try on wedding dresses! 

My mom helped me stay calm over the phone, as my parents live 2 hours away. Mom-zilla (as she refers to herself, by the way!) was excited to explain her daily wedding ideas. God Bless anyone who is not as lucky as I am to have the most amazing mom and dad help me plan the wedding of my dreams. They are angels. 

I feel bad for myself about 15 times a day but decided to take a deep, deep breath and clear my mind and my heart. I am so lucky to have an amazing group of people that pray for me and think of me each day, but sometimes I need to take care of myself, too. Anyone can send me strength, but I’m the only one that can do anything with it. I need to be strong. I owe it to myself to fight.

Besides taking care of myself tonight, I’m sending love, strength and hope to anyone who may need it this very moment. Everyone jumps hurdles and fights battles, small and big, and every single one of these people need love as much as I do. We all do. I want everyone to take 10 seconds for a prayer, kind thought or message of encouragement that you can send to anyone, any way. It’s easy to make someone smile. 🙂

killing and planning.

Today was the beginning of my 3rd week of chemo and radiation. If anyone hasn’t heard, I am lucky enough to take the pill version of chemotherapy. Every night before bed I take 2 “chemo pills”. Last week, I actually was at Nate’s basketball game later in the evening and because of the time I needed to take my chemo pills, all I had to do was reach in my purse and take a sip of water and poof! done! no hospitals! no needles! It is amazing what changes have been made in medicine. 

Unfortunately, I do have to still go to the hospital for radiation. Every morning at 10:15, Monday through Friday, I toss my Center Cancer parking pass on my dashboard and walk through the sliding doors. I have my own card, similar to a debit card, that I scan when I come in and that is the technicians way of knowing I am here. Usually someone calls me back within 2 or 3 minutes of being here. I stop at all of the monitors to give them my name and date of birth and then walk down a short hallway. In the actual radiation room, I lie on a table with my head in a customized form, they prop my legs up so I feel comfortable, give me a little ring, almost made out of a pool noodle, to hold onto and sometimes I ask for a warm sheet. The technician takes out my personal mask, it is hard and formed to the shape of my face with only the eyes cut out, puts it over my face and snaps it down tightly and leaves the room. The lights are dimmed and for what seems like barely 5 minutes, I close my eyes, say a prayer and visualize the cancer leaving my body and being killed, never to come back. The 2 technicians open the door and turn on the lights, unclip my mask and say “See you tomorrow!”. As my radiation oncologist usually says, “Go home. Get rest.” and that is what I do! Most days I am so exhausted and physically tired that I sleep for hours. I know my body needs the rest, but if I don’t set my cell phone alarm I could sleep until Nate gets home from work! He is amazing though, if I do sleep all day, he doesn’t bat an eye, no questions asked. The only task he asks of me during the day is to water the plants outside, and I think I can manage that.

During my 2nd week of chemo and radiation, I noticed more side effects. Nausea from the chemo pill and mouth sores, fatigue, constipation and loss of appetite from the radiation. Every Monday after radiation I have a short appointment with my radiation oncologist and every Tuesday after radiation I have a quick batch of blood work. Today I was happy to tell my doctor that my nausea has seemed to lessen, I haven’t noticed any new mouth sores, I seemed to have more energy this weekend, my constipation is getting better and my loss of appetite is the same, not worse. I have a new symptom! Hair loss. I knew from the beginning that there was a high chance of having hair loss from the radiation. There are 3 beams then cover my head during treatment and because of the location on my head, they assumed I would have some hair loss. I never really cared about that. There are hats, wigs and scarves to cover any hair loss. I already have a noticeable patch from my hair being shaved before surgery and the ugly scar that probably will never grow hair there. But that’s okay. I would give up hair any single minute of my life to have cancer be gone! Yesterday I told Nate I felt pretty nervous and upset. I took a shower and brushed my hair and found several long strands of hair on my palm. That never happened before and I assumed it was from the radiation. I know I still have a whole head of hair and I know I will lose more than those few strands. This same thing happened this morning when I got out of the shower, and now all day I keep touching my hair to find strands of hair in my palm, in between my fingers or laying on my shirt. I told my doctor and he is certain it is from the radiation, and he wasn’t concerned about any of my other symptoms. I am so amazingly lucky that I could hear him opening and closed doors to the other patients rooms and could tell he had been in there for quite a time. He popped into my room, heard of my hair loss and the slight changes from last weeks symptoms, said that last weeks blood count was perfect and asked if I was going home to rest and then said “Go home. Have a good day.”. I left feeling confident and positive that he didn’t have any concerns on his end. Whew! Another week and I think I’m going to be just fine!

I left radiation and stopped at a possible wedding venue. How exciting! It’s the first place I actually physically looked at and it is so crazy that I’m planning my wedding! I am so so happy. 

On to another girl of killing cancer and planning weddings!

love and marriage.

The most important, happiest, crazy and exciting news happened to me last Saturday, July 6, 2013……I’M GETTING MARRIED! Nate got down on one knee and proposed to me! I of course said YES! (even though I think I would have said “HELL YES!”) I am so, so, so happy. Nate and I have been together for 8 years and I never thought this day would come. 

When I found out I had cancer, I kept thinking that I would never get married, that I would never feel that happiness and joy of being a bride. I am so happy and looking forward to finding this happiness and joy of being a bride and more important, being Nate’s wife! 

Sometimes I feel guilty. Sometimes I feel like Nate doesn’t deserve this. He will probably be a widower. He might not have children because of me. He has been robbed of a “normal” life just as much as I have. I’ve told him before that if he isn’t up for this battle, leave. I really don’t think I would blame him. I know I wouldn’t resent him. He didn’t ask for this cancer curse. Nate never left. Nate hasn’t left my side once. Instead of leaving, he promised to be by my side for the rest of our lives. He loves me and I love him. 

Now, to not become Bridezilla……..

daughter.

Having a tough night. When I’m having sad thoughts or just can’t seem to quite get it together, there are two people that I know will always be there… my Mom & Dad.

I started to think tonight about the scary word, the one that keeps haunting me and I can’t seem to ignore: death. There hasn’t been a day since April 25th that I haven’t thought about dying. Unfortunately, that magic word cancer has become just as magical as death. Nate has been so strong. My family has been so strong. I know they get sad and that is the worst feeling in the world. They’re sad and it’s basically because of me. They sure as hell are good at keeping me positive, and keeping themselves positive, too, when I’m sure all they want to do is break down. So many nights I have cried in bed because “I don’t want to die and leave Nate alone every night”. The first morning after I found out I had a tumor, I told my Mom that I kept thinking about Nate going to bed alone, with our little kitty cat, Ruby, snuggling next to him, and I cried and cried at that thought. He is amazing. He keeps reminding me that cancer or not, I need to live my life. I need to dream. I need to smile. I need to live.

I didn’t want to say something to my parents, but I text my Dad tonight. I told him that I actually hoped that he or my Mom passed away before me. I don’t want them to watch as I get more and more sick. I want them to be able to look at me as their baby girl, the healthy and vibrant daughter that they know. I also told him that I don’t want to be alone in heaven if I died first. How the hell do you explain something like that to your father? God, I don’t want them to have to watch me suffer. At the same time, I would be lost in this world with out my parents. I used to joke that if anything happened to one of my parents, that I would crawl into a hole because I would be so devastated. Well, I actually think I would crawl into a hole because they are the two most important people in my life. I need them so badly, just as much as they need me.

Well, another raw emotion brought out by that asshole known as cancer. We always joke in my family that I was the little adopted red head and that my parents are senior citizens that still make out (eww). How lucky, lucky, lucky am I to have them for the ups and downs. I would never, ever trade those two. Besides, my mom is the best shopping partner and my dad can fix anything in mine and Nate’s house!

 

 

 

thank you.

There is one thing that I have said and continue to say over and over. THANK YOU.

Thank you God for giving me the ability to wake up every morning, strongly put my feet on the ground and smile. Thank you God for giving me the ability to laugh at life’s happy moments. Thank you God for giving me the ability to see my loved ones, flowers and beautiful skies. Oh, how long this list could be.

From the first day I knew I had cancer, I have expressed how thankful I am. Don’t let me get wrong, there is a lot that I am angry about. I have an Anaplastic Oligodendroglioma, brain cancer, and have been told that the average survival rate is 15 years. Every day, every minute, innocent peoples lives are being turned upside down. Unfortunately, some of these people have been given days, months and very few years to live. How thankful am I for having been given a better prognosis than what I could have been given?

Too often patients search and beg for answers to their pain for months or years. How thankful am I for having been given a diagnoses of a tumor within hours, and cancer within days? I am so lucky. I am so lucky that I physically have no signs of being ill. Most people look at cancer as a death sentence. There are so many types of cancer that have no hope for surgery, treatments or a future. From day one, I have been told that my cancer is very treatable and responds well to treatment. What a relief that I have been given hope. I have been given hope for myself and also to those that never may had a chance for hope. 

I am scared. I am overwhelmed. More importantly I am lucky, grateful, fortunate, blessed and loved. I wake up every day not knowing what my future has in store. But I do know that I’m alive. I have been given another day, another day to dream, hope and fight. For that, I will never take for granted how beautiful of a life I have.

who I want to become.

I’m finding myself disliking myself lately. 

I keep explaining to family and friends that I really feel badly towards Nate. My parents and my sister all live out of town and they luckily don’t have to deal with my illness 24/7. I understand that they really are dealing with it 24/7…mentally, emotionally, etc. Luckily, they don’t have to deal with it physically…they don’t have to see me cry, hear me yell, watch me get angry. Nate has to see all of it, hear all of it and feel all of it. We live together and his only break is when he’s working, and that isn’t much of a break. I hate that so many people are affected by this, more than just me.

I’m finding myself getting more angry. I’m angry that I have cancer and I’m angry that my future is not what I had planned. I’m angry that I can’t just physically do things that I could before my surgery and that I won’t physically be able to do things during my treatments. I found myself this weekend being the party pooper, the one that can’t do the same things as everyone else because I’m ill. My doctors are all telling me to “Live my life as normal.”. I just don’t quite know how to yet. Nate is getting angry that I’m not listening to the doctors and just doing what I want to, just enjoying life. He’s angry at me that I’m using cancer as an excuse, and quite frankly I’m angry at myself for using this excuse, too. It is so easy to pull out the cancer card, but this is just a hurdle I need to overcome within myself. 

It is so easy to read a quote, a brochure or research that has positive words, ones that make me smile. Those words make perfect sense and enough to want me to be a better person. The second I’m feeling sad, frustrated or angry, those words just jump out the window and I act as if they never entered my mind. Unfortunately, too many cancer patients understand these feelings, but if you’ve never been told “You have cancer.”, you just don’t understand. I feel like I’ve been inducted into some awful secret society. I just want everyone to understand how I feel, I pray that no one ever has to understand how I feel.

I feel as if I need some kind of incredibly huge emotional and physical cleanse. I want to cleanse my body of my anger, towards others and myself. I want to be someone that I’m proud of. I want to be happy. I want to be at peace.

 

choices.

I hate to think that “Life is too short” because it makes me think like I’m going to die. I know, I’m going to die, we’re all going to die, it’s just different now. 

I got gas today and went inside to pay the cashier. There was a woman in line ahead of me just standing there waiting. The cashier said she would be right with us, that she had another customer who needed to run outside to their wallet. I stood here with my hand on my hip, probably with a disgusted look on my face and stood there, waiting. I find myself getting very anxious now, more than usual, especially when I’m in public. I know this sounds ridiculous but I feel like I need to make everyone stop and listen to me, “Stop! I have cancer! Get out of my way!”. See, it sounds ridiculous, but it’s how I feel. 

The customer came running to the cashier, paid for her food and thanked everyone for their patience. I genuinely smiled and took a deep breath, tried to calm down and relax. The woman waiting in front of me said “People are always in such a rush! Slow down! You’ll get there!”. Then I felt sick. I thought “I can’t slow down! I have cancer! I’ll never be able to relax again!”. Nate would have killed me if I did, but I wanted to tell her exactly what was thinking in my head. No, I didn’t say anything, but I wanted to. The icing on the cake was when that same woman then asked the cashier for a pack of cigarettes. Dude! Stop smoking! 

I don’t smoke. I don’t tan. I don’t know drink. I’m a good person. I don’t want to have cancer, yet I have it. Now, I have to watch perfectly healthy people fill their bodies with toxins, and not have cancer. It’s not fair. I have cancer, I didn’t choose it and I really, really don’t want it. There are people walking around every day that don’t have cancer and they have the chance to avoid it, but they don’t. Please, please, please… do WHATEVER you can do to keep your body healthy, disease free and cancer free. I’m praying to make it past my 40th birthday, but if you put down a few cigarettes or whatever your guilty pleasure is, you’ll probably live past your 50th, 60th and most likely your 70th birthdays. I’m not that lucky.

Take care of your body, take care of your loved ones bodies. I want to be here to live a long life with my loved ones.

everything you read isn’t always true.

“Holy crap, stop reading things on the internet!” I just needed to give myself a quick pep talk. 

I was in the middle of sending an email and needed to double check the spelling of my asshole of a tumor. It’s long, starts with an “O” and I just call it OJ Simpson. It’s stupid, why do they have to make such long, complicated words when fact is, it’s very simple… it’s cancer, it’s just simply called cancer.

Anaplastic Oligodendroglioma. See, it’s stupid. I googled it to make sure I was spelling it was correct, and it was the first time since April 25th, when my tumor was first found, that I even searched anything on the internet that had anything to do with cancer, brain tumors or Anaplastic Oligodendroglioma. I mistakenly clicked on 1 link and started reading about other patients prognosis and survival. Luckily, they were all over the place so I didn’t feel an overwhelming “I’m going to die in 3 years” sensation. I’m still scared-as-shit. 

I had to close the website, sit up straight and say “Maggie! Stop!”. I put a smile on my face, took a deep breath and brought myself back to Earth. I might have to tell myself that it will be okay, and say it like I actually mean it, but it will be okay. One day at a time.