Sunday, December 1, 2013

In Memory

A cancer patient always feels like a cancer patient, whether they've been "cured" or not. I've mentioned this before, but I need to reiterate that point and remind you all of the meaning of the title of my blog.

Waking Up on Death Row.

That's how we feel every day of our lives. Like we're waking up on Judgement Day. Those in the midst of the battle will wake up wondering if today will be their last. Those who have seemingly won the war, at least for now, will wake up wondering if today is the day the bitch will return to finish the job she started upon initial diagnosis. Every ache and every pain, no matter how small, will push a panic button in the mind of these apparently happy and super secure people that no one, except other cancer patients or "survivors," will ever understand. And let me assure you that telling us to "think positive" and insisting we've "beat it" and should "move on" doesn't help us at all. We may nod and smile to your face, but inside we're screaming at you, "You just don't understand!"

So, let me try to help you understand why I can't just forget about cancer and move on. Put aside the torment that goes on in my mind EVERY day. We'll come back to that in a minute. Let's just go over the physical changes I've had to endure since cancer stepped into my life in 2011. First, there's the scarred up abdomen. Honestly, not the biggest deal in the world, but definitely puts a damper on bikini season. But, truthfully, the scars aren't my biggest outwardly noticeable problem anymore. Having a hysterectomy with ovary removal, followed by chemotherapy and radiation will send a young, sexy mama into menopause so fast she won't even have time to get used to the gradual changes that would normally accompany her Change of Life. In just two years I've aged about 20. My face looks so tired. So old. My eyelids are droopy, the wrinkles are plentiful and the bags under my eyes could take me around Europe for two weeks. I've also recently noticed the skin on my arms is starting to sag, which is super pretty. And then there's the shift in weight. Not weight gain, mind you. Weight SHIFT. What was once evenly distributed around my body has taken a one-way trip down South and is resting comfortably on my hips, ass and thighs. I do as much as I can at the gym, but with my radiation-damaged and fracture-prone pelvic bone, I've been instructed not to put any pressure on my back. That eliminates sit-ups, crunches, leg-presses and anything else that requires me to be flat on my back. Get your minds out of the gutter! So, barring those restrictions, I can do whatever I want, but my post-menopausal body will not snap back. My muscle tone has been replaced by jiggly, saggy gelatin that I've only seen on 60 year-old women. I feel defeated and depressed so I eat chocolate and french fries to fill the void. Obviously that only adds to my issues and the cycle starts all over again. Other physical issues that I deal with every day that make it impossible to forget about cancer are even less attractive. Without going into too much detail, suffice it to say that I should buy stock in panty liners and KY jelly because they've both become very important in my life. Oh, and before you say it, "Hey, at least you're alive!" doesn't help, either!

And then there's the mental anguish.

I'll admit it. I've allowed myself to try and stop obssessing over cancer since my last scan in September. I wanted to enjoy the feeling of being pregnant - well, the feeling of Lyndsay being pregnant with our baby. I wanted to focus on becoming a mom again. I was doing pretty well with that for the last two months, but then bad things started happening and I could no longer push the bitch out of my mind. 

I need to rewind a bit to fully explain.

After diagnosis I found a support group for women with my type of cancer, which was not an easy task. Cervical cancer groups are plentiful, but Small Cell Neuroendocrine Carcinoma of the Cervix groups all almost non-existent. Almost. Luckily, Facebook linked me to our "Rare but There" page, where I was immediately accepted by a very small group of women who were in various stages of my disease. For the first few months of reading posts and making acquaintences, not too much happened other than the typical chemo side effects or radiation vs. non-radiation discussions. But then, between Thanksgiving and Christmas of 2011, everything turned upside-down. In that one month, six of my cancer sisters, the youngest of whom was about 22, succumbed to the same cancer I had just finished fighting. SIX women in ONE month. Our little group was shrinking so fast and the women who remained were terrified. Some left the group to try and save their sanity, but others stayed to keep up on everyone else's progress. The tone of the posts changed from positive and hopeful to scared and defeated. No one knew what to say. It was the first time since diagnosis that I realized how deadly my disease actually is. It was the first time I learned that, remission or not, my five-year post-diagnosis survival rate is less than 20%. Yes, you've read that correctly.

I had surgery in June of 2011, so my chances of being alive in 2.5 years from today are less than 20%.

Does my anxiety make a little bit more sense? Just because I've kicked it for now, doesn't mean I've kicked it for good.

Back to the holiday season of 2011. It was a hard time for all of us and, while I was very sad for the ladies who were added to the "In Memory" album of our support group page, I hadn't actually met any of them. I also hadn't really spoken to them, other than a comment on a post here or there. They were real people but they hadn't become real friends yet. But then, over the next few months, I did actually allow myself to talk to some of my "sisters" outside of our Facebook page, either in private messages or via text. I was enjoying my new friends and had even managed to meet a few of them. Then, in April of 2012, Jimmi and I took the boys on a trip to the West Coast. We were driving to DisneyLand when I read on Facebook that one of my new friends was at the Park, too! I quickly messaged her and we made a plan to get together. I was pretty excited to meet another member of our rare group, especially since this woman was from Washington (state, not DC), so it wasn't like we could get together for coffee on a regular basis. Though we'd never seen each other in person before, our first hug was as if we'd known each other forever. Our shared experiences through our fights bonded us in ways I can't explain, but our situations were not totally the same. While I was in California celebrating a victory, she was there with her kids to make memories. You see, her cancer had come back three months after what was supposed to be her final chemo treatment. The doctors tried other chemo drugs, but the horrid bitch kept fighting back and growing when it should've been shrinking. While we spoke, she was so positive and as she talked about the next drug she'd try, her well-pronounced dimples showed each time she smiled. Never in a million years did I think that would be the only time I'd ever see those dimples. My new friend passed away a few months later.

That's when it became real.

Every headache, every cough, every stomachache, every backache sends my mind into overdrive and, because I know the reality of my disease, I instantly assume the cancer is back and spreading quickly throughout my body. My Facebook group understands these crazy thoughts and, since losing my friend in 2012, I've gained many more on that website. At first I tried to avoid opening myself up to any of them because I didn't think I could handle the losses. But it's hard to shut out the only people who truly know what you're going through. One more friend turned to two and three and four, and soon I had a plethora of extracurricular Facebook activity going on that turned acquaintances into sisters. These women shared my joy when we became pregnant with triplets and they cyber-hugged my tears away when we lost the twins. They've been rooting Baby A on through the entire 16 weeks she's been growing and I look forward to seeing their posts every day. 

But then it all started going wrong again.

MP joined our group about a year ago and she and I became fast friends when we realized we had a shared love for 80s rockers. The longer the hair, the tighter the pants, the hotter the guy! We spoke a lot over Facebook messenger while she was going through chemo and radiation and I was so excited to hear of her post-treatment clear scan. But the joy only lasted two short months. That's when MP announced her cancer had come back and it had spread. I'm a little fuzzy on the details, but I believe another chemo was attempted but didn't work so she was put on a clinical trial. The trial drugs made her sicker than the cancer and the chemo so she was forced to stop them. During that time, MP started radiation for new tumors in her brain. Finally, a new chemo was introduced and I believe she was only able to have one cycle before she was rushed to the hospital with numbness in the right side of her body. We found out later that MP had a stroke. I think it's been about a month since then and I miss MP so much. I know her family reads her Facebook messages to her, but she has trouble communicating and limited use of her right side so she's unable to reply. Her chemo has been put on hold while she's in therapy trying to regain what she lost during the stroke. 

And then there's MS. MS is a 26 year-old member of the US Air Force and mother of two young children. She has such a good heart and such strong faith. When the doctors told MS that chemo was no longer an option, she went to a Holistic Center in Florida (I think), that promised to heal her. After 8 weeks of natural treatments and cleansing her body of the harsh chemicals given to her by medical doctors, MS was told, based on her blood work, she was cancer free! We were all so excited for her, but still a little concerned that the center hadn't done any scans to confirm what the blood tests showed. A few weeks after returning home, MS went to her doctor and had a CT scan done. The news wasn't good. Not only was the cancer not gone, but it had spread. A few more weeks went by and MS was in horrible pain. More scans showed more cancer so she was put on another chemo cocktail. Then, last week, MS was admitted to the hospital for severe pain. They found that the cancer had spread, yet again, and a tumor in her spine had caused a fracture which makes walking impossible. MS has been referred to hospice care and has been told to get her affairs in order and start "preparing."

I can't go into all the stories, but add three or four more tales of recurrence or spreading in the last few weeks and you might understand a fraction of where my mind went last Saturday when I started having some new pains in my nether region. Sure, they might be caused by scar tissue or radiation damage. But I can't ever rule out the possibility that my cancer could come back at any time, without warning. The logical thing to do would be to call the doctor. But I don't want to. My other friend, MC, has a two-week rule that I plan on following. If the pain persists for two weeks, call the doctor. That means I have a week to go, right? And, honestly, I think it's gotten better in the last few days. Maybe that's just wishful thinking, but I'm choosing to believe it right now. And while I'm on the subject of wishing and believing, I think I'll wish for a life without cancer. Do you think Santa can wrap that up and stick it under my tree this year?


  1. This pains us-- the people who love you-- to read. It pains us because there's nothing we can say to make your anxiety go away, and it pains us because we can't even reassure you that we know how you feel. All we can do is tell you how very much we love you... and that we genuinely believe that you WILL get that happy ending... and then pray for it to be true. Sending hugs. xoxoxo

  2. Wow. I wish I had some words of wisdom but I don't. I'm so sorry to hear of the loss of your friends. It must be so hard. I don't begin to pretend to know how you feel. As a woman in her 50s that is going through menopause the "normal" way - I can certainly sympathize with that part of your life and it is NOT fun! I'm just going to pray that you are in the 20%. You are a very brave, amazing woman and you have a lot of people pulling for you!

  3. This makes me so sad Suzanne. My daughter, Mallory is another one who lost her battle this past month. Of course we believed she'd beat it, of course we believed that she'd get into a trial that would work, and of course we believed that somehow she was going to be an exception but we also knew we could be fooling ourselves. Still, no matter what, you have to believe, you have to have hope, people do survive this disease no matter how few or far between.
    I actually do know what it's like to "lose" yourself, body, beauty and all, I still struggle with it every day so I will be praying for your disease and your self esteem!

  4. Unless someone has gone through the same circumstances, they can't begin to comprehend the emotions one goes through in the daily struggle against the fear that the disease is back. I lost a very dear friend from WA State a couple of years ago. She had an irrepressible spirit & and endearing smile. I miss her so much & she & her family will remain forever in my heart & also in daily prayers. Thank you for sharing so much of yourself here. I hope it can help people gain an understanding.