Not Really Me

Last night, my Ultimate Bengal Fan introduced me to a great move; 1000 to 1: The Cory Weissman Story. Based on a true story, Cory is known as Mr. 1000 since he scored 1000 points in his high school basketball career, then received a scholarship to Gettysburg College. While prepping for his freshman season, he suffered a massive stroke that nearly killed him. It took him 2+ years of rehab to be able to suit up for a game. In the final game of his senior year, he scored a single point. His team was up by 20+ points with less than a minute to play. His coach allowed him onto the court (he was still suffering seizures so this was a liability for the school). The other team fouled him, so he could make 2 foul shots. He made the last one. It was a great story about determination, heart and the desire to live life. The Bengal Fan even said the liked it better than most sports movies because it didn’t have a miraculous comeback. It just showed him becoming “normal” again.

During one point in the movie, Cory is speaking with a psychotherapist. He breaks down screaming that he just wants his life back. The one before the stroke. That one scene continues to resonate with me today and I think it will for the days and weeks to come. I completely understand what Cory’s saying. I understand that primal need to get back what you had before.

People who have faced or continue to face a life threatening or chronic disease know that there’s two phases to your life; the one before the disease and the one after. Try as you might, even with medical advances and technologies, your life is never the same. You can do all the same things, be with the same people and wear the same clothes, but you’re never, EVER the same.

My sons continually point out to me that I’ve changed since cancer, but I’m never sure if that’s a good thing or a bad thing. As I’ve said before, they love to mess with my ever present chemo brain. They also talk about my penguin strut, although with PT that’s pretty much gone unless my feet are really numb. The gray hair jokes are starting to lose their appeal and I’m pretty sure the B-man is getting tired of telling the kids on the street, “No that’s NOT my grandma! My mom just looks old because she had cancer. Duh!” He then proceeds to explain that when you lose your hair to chemo, it comes back soft and gray. Nothing like a trash talking 9 year old explaining the pros and cons of chemo hair. I believe I can count these conversations as a health credit for homeschooling purposes.

I talk with my husband about this quite a bit. I miss what we had before cancer. Not that our life was one of romance and roses. It wasn’t. It was an average life, doing average things. But sometimes I can’t manage average.

We love to go to Home Depot. It’s a date for us. We walk around the store and talk about all the things we’d love to do in the house. I look at countertops and cabinets. He looks at Pergo and light fixtures and we dream about what our house could look like if we’d just win that $5,000 gift card for filling out the survey (somebody has to win, right?). We even have a list of future projects.

Then I’ll look at the budget. Now I did this before cancer, but not quite as closely. BC (Before Cancer), I just checked to be sure the money was there. In my PC (Post Cancer) life, I not only check to be sure the money is there, but I’m also checking the reserves in case we spend the money and the Beast decides to roar back into our lives. While I hate my carpet, I hate cancer more. We spend a lot of time wishing rather than doing, and that makes me sad.

Our financial advisor recommended that I get more life insurance. While cancer patients have a tough time getting insured, ovarian cancer patients just can’t get insured. My AAA membership allows me to apply for insurance “that approves nearly everyone.” Guess who didn’t get approved? I actually called the number on the letter that said I was declined. They politely said, “We don’t insure people who’ve had ovarian cancer.”

“Why?” I asked.

“Because you run a greater risk of dying.”

“Doesn’t everyone run a risk of dying?”

“Not like you.”

“Do you know something I don’t?”

“I’m sure you’re familiar with the survival rates. They just aren’t very good.”

“Yet here I am. How about a letter from my oncologist?”

“No. You’re not worth the risk.” OUCH! Now that’s customer service!

What I really wanted to say is “Let’s face it, life is fatal,” but that fact was lost on the Customer Service Representative I spoke with.

Fortunately, John’s employer offers spousal life insurance. Unfortunately, I could only get a fraction of what I need on a guaranteed issue basis. I was finally able to get Critical Illness Coverage as well. It will cover our deductible if and when the Beast returns. I hate feeling that I’m a drain on our financial future. We have to look at everything in the context of “what if.” We never did that BC. Being PC stinks.

There are parts of me that continually seek out my old life, while some parts embrace the new. Writing has become important to me once again and my faith is stronger than it’s ever been. I just hate not being able to do what I did before. I recently tried to do a 2 mile walk. After a mile I was about ready to fall over. I did finish it, but it was a sloppy finish. It’s a lot like how I clean my house. I start off strong, but in the end I just end up with a neater mess than I started with.

Coming to terms with myself PC is not easy. While I laugh at my PC quirks on the outside, there is a piece of the old me railing on the inside. That “new normal” everyone talks about stinks. But it beats the alternative.

Normally, I think being PC is overrated, but it has it’s benefits.

Helpful Hints

After my last post, my friend Caren asked me to post about what things are helpful to a cancer patient. After reading the feedback from the last post, I am doing so now. There are a number of things that cancer patients, especially those going through chemo and have children, find helpful and appreciate during our journey.

1. Be specific. Instead of saying “Let me know if there’s anything I can do,” make a specific inquiry. Asking “When would be a good day to bring you dinner?” is much better. So is “I would love to watch your children while you go to see your doctor. When is your next appointment?” I know I personally am so overwhelmed by what I’m not getting done, so if someone puts a general inquiry out there I’ll tell them I’ll get back to them simply because I’m too overwhelmed to decide what’s important. By giving me a specific request for help that requires more than a yes or no answer, I can provide a response that is specific to me and the person offering help. The best question I ever got came from a homeschool mom I know whose husband is a pastor. She offered to have the youth group come and help us for a Saturday by spring cleaning. I will NEVER turn down an opportunity for someone to clean my house. I can’t stand the smell of most cleaners right now (they make me extremely nauseous) so that will be a huge help. My friends Kelley, Sue and Karena are always looking for opportunities to watch my sons. My friend Cathy always asks if I need a friend to go to my lab appointments. Cancer patients need help and we don’t want to bother people. By making a specific offer, you allow the patient to tell you what they need.

2. Send a card or e-mail. My friend Denise B. knows how to make me smile. A couple of times a month she sends me a handmade card (she loves to make cards and one day I’m going to have her show me how). They always come when I’m feeling especially low and they always cheer me up. She also asks about bringing us dinner. My Facebook friend Lisa, who survived ovarian cancer, messages me a couple of times a week to check in. She knows I may not be up to responding, but she sends me a quote or picture or just a heart with the word HUG to let me know she’s thinking about me. My BFF Sue posts inspirational posts on my FB wall. These acts don’t take more than a minute to do, but they mean so much to someone who is stuck in the house because they feel lousy post chemo treatment or, as in my case, stuck because my neutrophils (white blood cells that fight infection) are so low I can’t leave the house because I could get very sick.

3. Pray for us. I’ll be honest, there are times when, as I’ve told my friend Cathy (another cancer survivor), that I feel like a piece of gum that God scraped off the bottom of his shoe and tossed aside. Now, I know that’s not true. I have a very vivid image in my head that I lean on based on the Footprints story. Jesus and I are walking on the beach and right now we’re just sitting watching the waves because, quite frankly, that’s about all I can handle. He reaches over and squeezes my hand or give me a hug, but we rarely speak. We don’t have to. He knows how I feel and that there are times when I just can’t pray. The prayers of others have lifted me out of the dumps more times than I can count. You don’t even have to let someone know. As Nike says, “Just do it!”

4. Pray for our husbands or wives and children. As my friend Cathy tells me, husbands get our tears and fears. I can put a happy face on when I go out or when people bring us a meal, but he sees me during and after chemo when my body aches so bad and I’m so nauseous that moving in bed is a monumental effort. At this point, he is definitely being supportive husband as well as taking on the duties of both parents. He cooks, cleans, shops and is a caretaker, which is not a normal role for men. In many ways, his role in treatment is so much more difficult than my own. My children are young, but they know that Mom needs to nap and has a tough time doing the things she used to do. And they are tired of it. As much as I need prayer, they need it just as much, if not more. Family is my number two reason for going through the hell of chemo (not wanting to die is number one). I need them to be tough right now. It’s especially difficult for one of my sons who’s a control freak. He can’t control cancer and it drives him nuts. As a result, he controls everything else in our house which drives the rest of us crazy. Praying for our families is as important as praying for the patient.

5. Ask how we’re feeling. Now I need to put a caveat on this one: if you don’t really want to know or expect a blanket, I’m fine, don’t ask. I will tell people I’m very tired, been nauseous or that I’m feeling pretty good. If I say I’m tired, it’s fine to say “I hope you get some much needed rest soon.” If I’m feeling good, you can say “You look like you’re feeling better today.” I have no clue how to respond to someone who’s nauseous. My husband has resorted to saying, “Is it time for an Ativan?” which is the only anti-nausea medicine that works for me. My mom asks if I have enough 7-Up.

I can’t begin to count the number of people who have offered specific things or gone out of their way to try to make this journey easier for us. And they have, without knowing it, done these exact things. The most difficult thing I’ve learned is to accept help from others. I love to cook and it’s hard for me to accept a meal. I’ve always taken care of my kids and it’s tough for me to let others drive them places without feeling like I’m imposing. My friend Kelley tells me that’s what the body of Christ is supposed to do, take care of each other. And the body that surrounds my family is a living, breathing example of Jesus’ ministry in action.

For those of you who’ve stepped out and helped John, Kyle, Braeden and I, we cannot begin to thank you enough. You have helped us through a journey that we never wanted to take, but has shown us the kindness of both friends and strangers that we can never repay. Thank you and God bless!