The Aftereffects…

Being a cancer survivor is a glorious thing. It reminds you how precious life is. It gives you a new understanding on what’s important. There’s nothing easy about having cancer, no matter what your original diagnosis or treatment was. Cancer sticks with you, even when all the treatments have ended. It’s a lingering thought in  your mind, no matter how far back you push it.

The last few days have brought thoughts of cancer too swiftly into my brain. The first was a nightmare I had on Thursday night. It was so vivid, being in my own kitchen on the phone, the doctor telling me my cancer had returned. It’s not the first time I’ve had a nightmare with similar circumstances, every time being suddenly woken in a panic, my heart pounding. Then this morning, while cleaning the house, I stumbled upon some items that we had needed after my hysterectomy. Items I had shoved to the back of a cabinet because I just didn’t want to look at them. In my mind I was brought back to that time (almost two and a half years ago) which was filled with anger, fear and despair.

You see, no matter what I do, cancer will always be with me in some way. I’m thankful daily that my body is rid of the cancer that invaded. But cancer leaves an unwanted gift that I’m not sure will ever go away. It’s fear and anxiety that come up at unexpectedly.

For me, some of these times are when…

  • I see old photos of myself, about 20 pounds heavier. People are constantly saying how lucky I am to be so skinny, that I don’t have to worry about my weight. But let’s face it, we all have self-confidence issues, no matter what our body type. For me, I hate that I’m so skinny, because the reason I’m underweight is due to how much I lost during cancer.
  • I see photos of someone expecting a baby or commercials of newborns. Don’t get me wrong, I’m thrilled when I see friends and family bringing the joy of a child into their lives, but there are certainly times when it hurts. I’d always wanted two or three children. Sure, there’s a definite chance my daughter would be an only child, even if I hadn’t gotten cancer. But having the choice stripped away at the age of 34 sucks.
  • My daughter tells me she wishes she had a brother or sister. She doesn’t understand everything that happened back then; she was only a Kindergartner. But this goes along with the children I had always considered having that will no longer be.

I wish I could say that when you finish cancer treatment and move forward in life that your fears dissipate. But from experience, that simply isn’t true. The memories of treatment stick with you, no matter how happy you are to move forward into a new sense of normalcy. What you used to worry about may no longer concern you as much; but your mind now has a new set of fears and anxieties to deal with instead. But, what we can do as survivors, is surround ourselves with things or people that make us happy to help cushion those difficult fears when they occur.

Advertisements

What Could Have Been…

So this is a longer blog post, but it was almost therapeutic to write for me. In two years since my cervical cancer diagnosis, I’ve wanted to write my original gynecologist a letter. I don’t know if I’ll ever send this to her (I’m keeping her name out), but I felt it might remind others to ask questions and to never assume your doctor is doing what you thought was right. This is your body, your life. Ask questions and be persistent, no matter how well you know your physician.

Dear Doc,

Since I haven’t heard from you in over two years, I thought I’d write and let you know I am well. I am cancer free since the end of 2014 after undergoing a cone biopsy in July 2014, a radical hysterectomy the day before my 34th birthday in August 2014, and then five rounds of chemotherapy and 28 rounds of external radiation that ended in November 2014.

In September 2014, my daughter started Kindergarten, my daughter who you helped bring into this world via c-section on January 2009. She started less than a week after my hysterectomy. I still had a lot of discomfort and a catheter from the surgery. I tried to hide the tears as my family pushed me in a wheelchair so I could “walk” with my daughter on her first day of school. During treatment I missed attending some of her first school activities because it would have been dangerous to get sick.

Back then my daughter didn’t understand much of what was happening. She still doesn’t really. She asks why she can’t have brothers or sisters like many of her friends. She can’t yet comprehend that what made mommy better, what got rid of the cancer that could have killed me, also took away my fertility.

I’m telling you all of this because you need to know it. I need you to know what I went through, and I need you to know that I’m angry about it. I’m angry that when I came to you in November 2013 and complained that I was having some bleeding after sex, you told me I had a sensitive cervix, probably due to changing hormones. The only tests you did were swabs for infection. I’m angry you didn’t do a Pap test based on the knowledge that over the previous few years my tests had been clear. I’m angry that with my history of HPV (since 2007), abnormal Pap tests and multiple colposcopies/biopsies, you didn’t consider that a Pap test was warranted even though bleeding after intercourse is a symptom of cervical cancer, in which more than 90% of cases are caused by high-risk strands of HPV, one of which I have. I’m angry that I went on for almost a year thinking that the bleeding I was having was due to my “sensitive cervix”. I’m angry that when I returned in July 2014, less than a year later, it was so obvious that something was wrong the moment you did an internal exam and had to do a biopsy. I’m angry that less than a week later I had to get a phone call that I had cervical cancer. I’m angry that there’s a great possibility that my cancer could have been caught almost a year sooner if a Pap test would have been administered when I first complained of the bleeding.

When I was first diagnosed you offered your cell phone number, told me to text or call if I ever had questions or needed to talk. You made me feel like you were there for me through this horrible ordeal and that made me feel good. For a while you seemed genuine. You would answer my messages or voicemails fairly quickly based on your schedule. But as things progressed in my cancer journey, you stopped answering. It was hurtful and it was wrong. I often wonder if it was because you knew you’d messed up.

I went through a lot during my cancer journey, I still do. I was out of work during the months after my surgery and during treatment to allow my body to heal. My husband was also out of work during part of this time, so we had very little money coming in and a family to feed and a roof to keep over our heads. But at least he could keep me company during some of my chemo and radiation. We made it through with help from our loving and supportive family. I developed quite a bit of anxiety that I still take Xanax for; it doesn’t stop me from being fearful that my cancer will return, but it does soften the horrible panic attacks I’d been having. I’ll always be scared that cancer will come back, that I won’t get to see my little girl (who just celebrated her eighth birthday by the way) grow up, get married, and have children of her own.

I am currently NED for two years and my amazing gynecologic oncologist feels I’ll remain that way. I can only pray he’s right and that I get to live to be an old woman. But even though I am healthy, which I thank God for every single day, I am still angry with you. People have suggested I file a law suit, that your not performing a Pap test based on my history and symptoms was malpractice. I’ve considered it multiple times, but what would it fix? Yes, we could certainly use the money, but would it truly help anyone?

I’m writing you this letter because you need to know that I’m alive and I’m thriving, but that it could have been worse. I need you to know that I always wonder how things would have been if you had performed a Pap test on me when I first came in and discussed with you that I was bleeding after intercourse. No one can know what would have happened, but considering it was almost a year before my cancer diagnosis, I often think my treatment would have been far less invasive. Maybe a LEEP or cone would have been enough to rid my body of cervical cancer. Maybe I could have avoided a full hysterectomy, chemo and radiation, and could have had more children. Maybe I wouldn’t be in full blown menopause in my mid-30s. Maybe I wouldn’t have severe panic attacks.

But you can’t go back and change what has already happened. I can only be happy that I’m alive and healthy and able to see my beautiful, intelligent, compassionate daughter grow. That I can enjoy everyday to its fullest. But you need to know that there are other women out there like me who will trust you and take your words without questioning them. You need to know that a Pap test is warranted whenever a woman with a past of HPV comes in with even the slightest possible symptom that could signal cervical cancer or precancer.

I am an advocate with Cervivor now, a non-profit organization that educates women about HPV and HPV-related cancers. I’m using my story to help women understand these diseases and their bodies, so maybe they won’t have to go through what I did. I’m using the worst and most difficult thing that has ever happened to me, to help others.

I hope you understand that when I hit my five year NED mark that I will not return to your office. I hope you know that when someone tells me they’re a patient of yours, I ask them to be cautious and consider seeing someone else. Because I’m angry and because I worry for them. I know in my heart that you are a good person, but I also know that there’s a pretty good chance that my cancer journey could have been at least a little easier had you done the right testing in the first place. I hope you’ve already learned from my story when you surely heard from my oncologist, who you recommended, that I would need invasive surgery and then further treatment. I hope it made you stop and think and regret enough that you’ve been more diligent in the care of other patients.

Cervical Cancer Awareness Month

If you didn’t know, January is Cervical Cancer Awareness Month (CCAM). It is a time for us to remind women how important it is to get their annual well woman check-ups and a time for us to remember the women who have gone through cervical cancer or who we have lost due to cervical cancer. I could go into all the details of cervical cancer, HPV, and prevention, but instead I’ll suggest you read up on it yourself at www.cervivor.org.

This post is going to remain short. Tomorrow, January 31, is the final day of CCAM. Many women I know from Cervivor have been busting their butts on social media, through local community events, and on blogs to advocate so more women are better educated about cervical cancer and HPV. We “Cervivors” are saddened when yet another woman is diagnosed and has to go through what we’ve gone through (and may still be going through). We strive to inform and communicate with our friends, family and total strangers in hopes that we can prevent even just one more case of cervical cancer.

What I ask is that, no matter who you are or if cervical cancer has affected you on a personal level or not, on January 31 you go to work or school or the grocery store (or wherever your day takes you) wearing something teal and white, even something small.

Some may wonder what wearing particular colors for just one day can do… It offers support to women diagnosed with cervical cancer. It offers understanding to women who are Cervivors. And it can offer a reminder to women who may be at risk to make an important appointment and to listen to their bodies.

Wear it proud. Show it off. And remind the women in your life to keep up on their well woman exams so we can reduce the number of women being diagnosed each day. And remember, cervical cancer doesn’t care about how old you are.

2000px-tealandwhiteribbon-svg

When Do People Stop Caring?

This week I read a social media post from a fairly prominent legal correspondent and author that concerned a recent New York Times article about a family taken off an airplane because of their child’s peanut/nut allergies. The airline claimed they didn’t want to take responsibility for the family because they couldn’t assure that other passengers wouldn’t be eating nut products on the plane. The family stated they were prepared, but because peanut/nut allergies can be fatal, the airline didn’t want to risk it. (The original article: https://goo.gl/3hIGbF.)

Ann Coulter chose to post the article to her Twitter and Facebook pages with the following…

“If your food allergy is so serious that you need to inconvenience 250 other people on the flight, you should drive.”

Her post was appalling and disheartening. As a mother of a child with a serious food allergies, I cannot understand how human beings can so easily stop caring about the well-being of others. This family was not inconveniencing anyone at all, if she actually read the article. They wanted to fly to their destination like everyone else on board that plane, with their epi-pens and antihistamines at the ready (if necessary). (And by the way, their destination was an island, so I think driving was out of the question.) So, what, by her definition, is the inconvenience?

Would it be an inconvenience to ask passengers to not eat any peanuts or nut products during the flight? Would it be an inconvenience to ask passengers to consider the life of another human being over their snack choices? This family did not ask for that, as far as the article is concerned, but would it be so unacceptable to ask the passengers of a flight to enjoy some pretzels or chips instead of a pack of peanuts (or other nut products), just for a flight in order to protect the life of a fellow human being?

Even more enraging were some of the comments left. Many were due to lack of understanding of food allergies from people who surely have never had to deal with them. But there were a few that were disgusting, such as a gentleman who claimed that: “you were not supposed to survive natural selection if you are allergic to the world around you.”  For anyone that agrees with such an ignorant thought, you best consider the idea of “natural selection.” Stay away from antibiotics, vaccines, and any other medical treatments and see how well your existence in this world fairs.

What angers me the most about everything I saw after Ann Coulter’s heartless post is that it seems there are too many people in this world who’d rather eat whatever, whenever they want instead of considering the lives around them. They’d rather eat a bag of peanuts on a plane and risk the life of a child, a child like mine who did not choose to be born with an allergy, than partake in another snack for a short portion of time in their lives. What a dismal world we’ve come to live in when grown men and women can so easily ignore the lives of others around them.

To My Daughter on Her 8th Birthday

Eight years ago I waited anxiously for your arrival, nervous and scared of becoming a new mother. The moment I saw you I was enamored by the amount of love one person can have for another. Everything about you was perfect, and still is. Watching you slowly grow into an intelligent, brave, compassionate young lady has been the most amazing part of my life.

Just over two years ago I feared I wouldn’t get to see more of your birthdays. When I was told I had cancer I immediately thought the worst, and you were the first thing that popped into my mind. How could I leave my beautiful little girl? But as I moved through surgeries and treatments to kill the cancer that had invaded my body, you became my strength. And you didn’t even know it. You didn’t know what cancer was, only that I was in pain or didn’t feel well. You didn’t know I was scared, but you knew to snuggle me or give me kisses.

You were my reason for living and fighting to kick cancer to the curb. I thought daily about the possibility of not getting to see you celebrate another birthday. I cried at the notion of not seeing the woman you are bound to become. Every fear I had was rooted in my love for you.

You still don’t know just how sick mommy was two years ago and I pray you never have to see me that way again. I know you can’t quite understand it yet, but someday I will explain it to you. I’ll explain how a virus caused cancer to invade my body. I’ll explain how it was the reason I couldn’t give you the brother or sister you wanted. And most of all, I’ll tell you how you helped make me better without even knowing you did. My reason for fighting was you, and it always will be.

In a few years I’ll read this to you, when I know you can understand it. I’ll tell you how every birthday I help you celebrate is more special to me than I ever considered before. Thank you for being the light at the end of a tunnel I feared would engulf me. Thank you for showing me how much love can push us forward.