Looking Back

To put it lightly, it was a long journey with my mom's cancer....

In April 2007, we noticed she was sleeping a lot. On Easter, she fell asleep at the kitchen table. On April 12, she fell asleep in her office at work. The next day, Friday the 13th, she woke up and wasn't making sense... she didn't know what year it was or who the president was. She was taken to the neuroscience intensive care unit at Lehigh Valley Hospital Cedar Crest.

That night, I was out at McFadden's with my roommates. My dad kept calling me, and I kept ignorning his call. I wasn't going to answer while we were in a bar... there was no way he could hear me. Finally, I realized something may be wrong... I went outside, and he told me what happened.

We made a very emotional subway ride back to La Salle, where I remember running from the subway station back to my townhouse.

The next day she was diagnosed with a brain tumor. They operated on her on Thursday, and they removed 80-90% of the tumor.

During my finals week, I got the call that the tumor was cancerous. I had made a conscious decision that I wouldn't look up anything about glioblastoma multiforme (GBM)... I know that sounds stupid, but I was scared to find out what we were up against. Despite only having brain surgery 3 weeks before, she attended my college graduation ceremony.

After the surgery, Mom was doing pretty well. She certainly wasn't the Mom I grew up with personality-wise... those of you who knew my mom knew she was very bubbly and friendly. She wasn't mean or anything... I think she was just a diluted version of herself. Still, she was eating well, walking, sleeping, even driving to her own radiation appointments!

In July 2007 while reading health news releases at work, I accidentally stumbled upon information on my mom's cancer and read people with GBM have less than a 1% chance of survival. I think I went into the bathroom at work and hyperventilated.

I didn't tell anyone about what I read. I felt like saying it would make it come true. Instead, I kept what I knew to myself and cried on my long commute to and from work for weeks.

In August 2007, my family went on a vacation to Ocean City, MD. I couldn't go because I didn't have any vacation days yet. One day at work, my dad called and said my mom's brain was bleeding and they were flying her from OCMD to LVH-Cedar Crest. I had to leave right away because I would get there before they would.

I remember crying in the ER's waiting room alone, until a priest came up to talk to me. It was all very surreal.

After the brain hemorrage, we noticed some changes in Mom. She wasn't talking nearly as much... she stopped asking questions and bringing up conversations. She was also starting to lose the ability to go to the bathroom on her own. She was slow-moving, and usually my sister, dad and I all had to help her take a shower. We had a chair lift installed on the steps so she could get up to take a shower.

That fall was rough for me. On top of keeping my secret about Mom (which of course, other people knew... it was only a secret to me), I was commuting over an hour to work using a car that had broke down on the turnpike 3 times for me. I was searching for an apartment with Ter and Gilmore while going through what every college kid who moves home goes through. Because of this and Mom's situation, my dad and I fought a lot. I had to "mommysit" a lot, and also help drive Brandon places. Also during this time, I got into a relationship with someone who I was not compatible with whatsoever. I don't know why I didn't realize this at the time... maybe I did, but I just needed a distraction to get my mind off of Mom.

In December 2007, Mom had blood clots in her leg. She got out of the hospital two days before Christmas Eve, but she still insisted on going to Christmas Eve service. I remember her mouthing along with the songs.

After that, things started going downhill. She really had hard times walking, and I think soon after the new year, she never went upstairs again. She was very quiet and always kept her head bowed. Still, she would always give her kids a "hi, honey" when we got home. And she still had a sense of humor... if someone said something funny, she's laugh her precious, distinctive laugh.

Things were getting bad for me personally, but thankfully, right after my ex and I broke up, I moved to Philadelphia in March 2008. Things got dramatically better for me. I loved living with friends again, and it was nice not having to drive forever to get to work. I still went home on the weekends to see Mom. Part of me felt really guilty for moving out... but I know it was what my mom would have wanted. Plus, I was going insane living at home.

By the summer, Mom was pretty much solely in a wheelchair and didn't spend too much time outside her bed. She was saying very few words. In August 2008, she went into the hospital three times, once because she had an infection in her stent and twice because she had a vasovagal attack. Also over the summer, we found out that the tumor had grown for the first time since the surgery.

On September 17, 2008, the doctors said that the oral chemo she had been taking for a year wasn't going to do any good anymore. They gave my mom 2 weeks to 2 months left to live. Soon after this diagnosis, I heard my mom say my name for the last time.

The next couple of months was like living on pins and needles. I never knew when I was going to get the call or when things were going to happen. I was so torn... despite the fact that she had pretty much no quality of life left, I didn't want to lose my mom. I'd never been so afraid. But I kept thinking about how I knew she wouldn't have wanted to live how she was living.

On top of this, there was other family drama going on at the same time. This issue upset me very much (it still does) and at times occupied my thoughts when I should have been thinking about Mom and preparing myself for her passing. She should have always been most important in my mind and should have always been the focus, and for that I am truly sorry.

It was sad to celebrate her birthday, Thanksgiving and Christmas, knowing it would be her last. Despite the fact that she said maybe one or two words a day, couldn't get out of bed and slept all the time, she was still eating normally, which was one of the qualifying issues for hospice. Besides are almost round-the-clock nursing assistants who were there to take care of her, a hospice nurse starting coming in and allowed the nursing assistants to give her morphine for her pain.

On Jan. 5 while on my way to work, my sister texted me and said Mom was going to hospice. I rerouted and went home. Emily and I got to the hospice before lunch. Mom was restless and was having tremors. Emily and I sat and held her hand... she was given medicine and calmed down a bit, although her breathing was labored.

We were told if she stabilized in the next 6-8 hours, she could possibly make it a few days. So by 8 p.m., my siblings and I decided to go home to go to sleep... especially because my brother had a bad stomachache. Barely 15 minutes after we got home, we got the call that her system was starting to shut down... and if we wanted to be there when she passed, we better get back.

Emily and I decided to go back, but Brandon still didn't feel well, so he wanted to stay at home (though he did get to speak to Mom on the phone before she passed). I ran upstairs to change and was shaking when I picked out a green Aero sweatshirt of Em's and some of her jeans.

Right before we left, my brother puked... all over the place. We couldn't go before we (and when I say we, I mean my sister and my Uncle Whitey, haha) cleaned it all up.

We finally left and got back to the hospice. Walking through the small parking lot, I saw my Uncle Roy (Mom's brother) and my Aunt Lori in the lobby. I had a bad feeling in my stomach.

I'm pretty sure I will always be able to picture this moment vividly: a nurse came to get Emily and I, and, holding a small candle with a quote from Mark Twain on it, led us into my mom's room.

She had already passed. We were too late.

I had always wanted to be with my mom when she died... she was with her mom, my MomMom, when she passed. I was so upset that we went home and I missed it. But now I think maybe it wasn't meant to be. If Brandon hadn't gotten sick and delayed us from going, we would have been there in time. And maybe we just weren't supposed to be.... she was stable for so many hours and as soon as we left, she started to decline. My Aunt Lori thought Mom was waiting until we left to pass.

The week after she passed was crazy emotional, for many reasons. I was exhausted from everything and I just wanted to get back to Philly... back to my escape, I guess. The services were beautiful, and thank you so much to everyone who attended. I loved hearing stories about my mom and people telling me how wonderful she was and how they'll always remember her great smile.

I feel very strange now... like I don't know how to feel. I am so glad she isn't suffering anymore, and I know MomMom, Nanny, Nicole and Jen all welcomed her into Heaven. But sometimes I still can't believe this all happened... like it's some horrible nightmare and some day I am going to wake up and things will go back to the way she used to be. In almost all of my dreams about her, Mom is healthy... and that freaks me out.

Part of me feels normal, because I am back to my normal routine in a place where I feel loved and comfortable. I also feel like I've been grieving for her for a year and half now. But then I'll see or hear something that reminds me of Mom, and it will all hit me.

I know I may feel differently in the upcoming months. I may have a breakdown or I may be fine... I don't know what's going to happen, and that really scares me. But I'm trying to just take everything one day at a time.

One thing I know though... I will always, always love her and miss her. I do feel cheated out of a mom... why do some people get to have their parents until they themselves are in their old age, while others lose them when they're 13, like my brother? It's just not fair, but I guess life isn't fair. I'll never understand why this happened, but it has happened, and I have accepted that.

I want to try and move on and live my life... because she gave me this life to live, and to live it to the fullest. And I know she is always with me.... I was a part of her and she is a part of me.... and death can't separate us that way. I won't be afraid to die because I know she will be the first person to greet me into Heaven... and that gives me some peace thinking about that.

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Whoa... OK, this was a lot, I know. Sorry for rambling. But I had to get this out now, to record how I'm feeling right now. I hope to one day write a book about my experience, or compile essays from people who have lost their parents to cancer.

One more thing... THANK YOU SO MUCH for being such wonderful friends. I seriously wouldn't be able to function if I didn't have you all supporting me. I love you all.... and I'm here for you in a heartbeat if you ever need me, just like you were there for me!!

Wow, Cancer Really Sucks

While perusing the Internet the other day, I found this article, citing that within the next year, cancer will beat heart disease and become the number one killer.

I'm not at all surprised. I feel like every time you turn around, you hear about someone else getting cancer. I'm sure everyone can think of quite a few people they know who have cancer, survived it or passed away from it.

What boggles my mind is that so much money is being put into cancer research... why haven't we seen any big changes yet? I feel like I shouldn't be saying this, especially working for a healthcare magazine. Every day, I read about clinical trials for a new type of drug or scientists are trying something new to combat a certain kind of cancer. I guess little by little, we are making steps toward beating this monster.

But for a lot of people, it's a little too late... including my mother. For a disease that can be dated back to the time of Hippocrates, why don't we have a cure for this yet? I know this is probably just a bitter rant... but I still pose the question. How many more millions of people are going to have to die before they can get some help??? How many more mothers, fathers, sisters, brothers, husbands, wives, children, friends, etc. will be taken away?

The Celebrity Effect on Healthcare

(Note: This is an expanded version of a blog entry I wrote for our work blog. Yay self-plagiarism!)

For those of you who don't know, I write for a healthcare magazine. Every day at work, I spend a lot of time reading new healthcare articles, studies, etc. And something I've noticed is what an impact a celebrity diagnosis can have on healthcare.

It seems if a celebrity or her loved one is diagnosed with an illness, it tends to get a lot of ink or television exposure.

For example, Jenny McCarthy has been talking about autism--her son Evan has the disorder. She's even written a book, called Louder Than Words: A Mother's Journey in Healing Autism, about her experiences.

McCarthy believes a vaccination Evan received caused his autism, and she's been speaking out about vaccines. On June 4 she led, along with boyfriend Jim Carrey, the Green Our Vaccines march in Washington, DC.

It is wonderful McCarthy is taking a stand and starting a conversation about autism--especially because her celebrity gives her the ability to, while many other mothers do not have the fame, and therefore the power, to make their cause known. But stances celebrities take and things they say about a disease can have a major impact.

There hasn't been any research firmly proving certain vaccinations cause autism, and the questionable substance in the vaccines has been removed. McCarthy and Carey's rally called for "national health agencies to reassess mandatory vaccine schedules," according to Fox News. If this influences health agencies to do so, will children be missing out on necessary vaccines?

Right after I posted the blog entry at work, Tim Russert tragically and suddenly passed away. Even though his death of course devastated his family, who were all just on vacation in Europe celebrating his son's graduation, and all other Meet the Press fans, it may have done some good for the American people. My coworker found a story reporting physicians are seeing more middle-age patients coming in concerned about their heart health after Russert's death from cardiac arrest. Sounds like his tragedy has been a wake-up call for many people.

Lastly, the case that, to me, is the most important: Senator Ted Kennedy's recent brain cancer diagnosis. About a month ago, Sen. Kennedy discovered he had a malignant glioma. He has since had a successful surgery

After his diagnosis, I saw a massive amount of articles and information about brain cancer on the Internet. What is it, survival rates, how it affects a patient, new trials and therapies that are being tested.

This is all close to my heart -- for those of you who don't know, my mother was diagnosed with glioblastoma multiforme, the most aggressive type of brain cancer, in spring 2007. (We're pictured below in my girl-mullet days. She swore to me it was not a mullet, but I beg to differ. Eeep!) It has been quite the rollercoaster ride for my family and I. My mom also had a very successful surgery (85-90% of her tumor was removed), last summer she had radiation treatments, and she is just finishing up a year-long round of chemo. Her tumor has not grown since the surgery; however, her quality of life has gone downhill. Post surgery, she was walking, cooking, even driving herself to her radiation appointments. Because of a few major setbacks, including a brain hemorrhage last August, she can no longer walk on her own or basically take care of herself. Her personality has changed too -- she is not the chatty mom I grew up with. Although she is always pleasant, I miss the mom I could talk to for hours. Obviously, this disease is extremely tragic and one that was previously not highlighted in the media. Brain cancer is rare, although gliomas are the most common type.

Back to Sen. Kennedy: I truly feel for him and his family -- I know what they are going through and how scary it is. However, I'm grateful his diagnosis brought about more publicity and public awareness of this horrible illness.

But my question is -- why is this what it takes to get brain cancer in the mainstream media? Why does it take a celeb's diagnosis to bring any disease "into the spotlight?" So many commonfolk suffer daily from a variety of serious ailments, and if they are rare, sometimes it takes a celeb to get the disease its "time to shine." to remove the tumor, and is expected to start treatments shortly.