I can't tell you how many times lately I've heard someone say," just wait until things get back to normal...or "just wait until you finish treatment, then you'll start getting back to normal." But what is NORMAL??? And why should I feel like I have to return to it? Even the word NORMAL indicates going back to something and there's absolutely no way I can ever go back to my life before cancer...NO WAY. It's not that I wouldn't love to go back to life before cancer, that would be amazing, but, I have to be realistic. I have to move forward from where I am right now. Cancer has left an indelible mark on me. The physical and emotional scars don't ever leave, but they do change everything.
Many people think that the difficult part of the cancer journey ends as soon as treatment stops, but that's hardly true. I can attest to the fact that my emotions are still haywire, my body still hurts, and I don't know if I'll ever feel good again. While I'd love to be able to bounce back quickly, I am more inclined to think it's going to be a long, hard road to recovery. It's difficult to explain to family and friends, because they only see the exterior. They don't see anything that I don't want them to see. I can hide my physical scars well. The emotional scars are a little more difficult to hide, but I've learned to camouflage them when needed. Even though the treatment is over (for the most part), I still need support and understanding. I still need people to be patient with me.
It would be so nice if doctors and support staff would take time to really explain what to expect after treatment ends, but instead, we're left figure it out on our own. Thankfully, the women who've traveled the breast cancer journey before, have taken time to share vital information about the reality of aftercare. It's very helpful to have someone tell the truth about physical symptoms and side effects and it's easy to believe because we know they've been there. But each journey is different and no one can prepare you for your own journey. Every day I learn something new about recovery and every day I realize it's a little more complicated than I had first thought it would be.
There's something strange about having breast cancer...all of a sudden you feel a kindred spirit with other breast cancer survivors, even people you've never met. The internet is a wonderful place to build camaraderie. There are many Facebook support sites and ways to connect to other breast cancer patients. Sometimes it's good to find others who can relate to the exact stage of treatment you're currently going through and other times, it's challenging. For example, I've found several women who've documented their entire breast cancer journey through VLOGS (video web logs). Daily they'll post how they're feeling, how treatment is going, what their challenges are, what they've overcome, etc. At first, those VLOGS were a huge blessing and helped me not feel so alone, but last month, one of those ladies passed away. I had watched her VLOGS for months and months and felt like I knew her as my own personal friend. We chatted a few times and sent each other encouraging Facebook messages. Week after week, I could see a very real physical change in Christina. It wasn't hard to see that she would die soon. I was prepared for it, or so I thought. When her husband announced her death, I was devastated. This young woman, not yet 40, with two young daughters, had died. I cried for her. I cried for her children and for her husband. I also cried for me. I cried for me because I knew that one day there was a very real possibility that I could be exactly where she was, with metastatic cancer at the end of my life. Now that Christina is gone, her family continues the VLOGS but I can't bear to watch them any longer. They wanted their viewers to be able to keep up with the lives of the little girls but I just can't. It's too difficult to watch and remember Christina.
Now I'm watching another breast cancer survivor's VLOG. She's also metastatic. The cancer is in her bones and her brain. She has 4 young children and a loving husband who is a pastor. But this VLOG is different. Kara and her husband are Christians. They use their videos as a ministry. They want others to see and understand that even in hard times, God is there. This one is easier to watch, or it has been up until this week. Yesterday, I could see the same thing in Kara that I'd seen in Christina during the last week of her life. There's a different look in their eyes, a kind of "going home" look. Kara isn't 40 yet either and it makes me so sad to know another family will soon be devastated.
When I watch and listen to these survivors, I can't help but think when will it be me? That's one of the biggest fears of a breast cancer survivor...the fear of recurrence. I know as a Christian, I'm not supposed to be afraid, but sometimes, it's hard not to be. And that's where I realize that nothing will ever be NORMAL again. It will always be challenging and different.
As I look at my Christmas tree and all the twinkling lights and beautiful ornaments, I wonder if I'll be here for the next Christmas. I'm not a morbid person but I do wonder. On my tree, I have photos of family members who've passed away. I hang them there to remember them year after year. When I look at them, I cry. That's another thing that breast cancer patients deal with, emotions that sneak up on you. Anything or nothing can make me cry and when it happens, it's overwhelming. Sometimes you feel like you're losing it. I can't help but wonder when there will be a photo of me on the tree...one for my family members to remember me by...I know what you're thinking..."well, that's just not NORMAL!" And no, it isn't. That's my whole point. I want you to realize that I'm not NORMAL any longer and never will be again. Things have drastically changed and things will never be the same...but no one said they can't be better and my hope is that they will be...one day.
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