A Change Is Gonna Come

The old Sam Cooke song, A Change Is Gonna Come, has always made me feel nostalgic. I love listening to his smooth, peaceful voice. For some reason, it reassures me that everything's going to be okay.

For the past few weeks, I've felt a stirring in my spirit. It feels like this year is going to be a year of great change.

It seems I've been stuck in a rut since I was diagnosed with breast cancer. I've jumped through all the hoops and have done everything I was supposed to do. It hasn't been easy. There have been many ups and downs, but I can finally say I feel an imaginary door closing behind me.  Maybe it's false hope or maybe naiveté, I am unsure but I'm both grateful and afraid. How does one move forward?

Navigating cancer isn't easy and everyone's journey is different.

For the past 6 years, it's all I've known. I am thankful to be doing so well. Honestly, I am more than thankful.

I have so many friends in the thick of the battle right now and I have one who's just about to embark on her journey. I try to offer love and support to those who are fighting. That's one of the things that meant the most to me when I was in active duty. But for the one who's just about to begin her time in cancerland, my heart breaks. I want so badly to give her a heads up, to let her know what to expect, but I don't want to scare or discourage her.  She's so optimistic right now.  I am afraid I'd burst her bubble.

But what's our responsibility toward the newly diagnosed? Should we share our knowledge or should we keep quiet?  It's a fine line to walk.

As a survivor, I've found, the days post diagnosis come with no guidelines or rules. It's a challenge to figure things out on your own, but that's what's required of us.  And day by day, change comes.

Don't forget where you've been

My mother always told me to look where I was going. More than likely she started speaking those words to me when I was very young but I don't really remember when I first started to hear her chide me. 

What I do know is that as a daydreamer/multi-tasker, my focus has never on what was immediately in front of me. My head was always swiveling, trying to see not only where I was going but where I'd been. That was not necessarily a good thing and often, I ended up with scrapes and bruises from my inattention. But, looking back isn't always a bad thing. In fact, it can be a very good thing. 

Sometimes it's necessary to take a look back in order to see how far you've come. 

Today, as I was working to free up some space on my Google drive, I came across a multitude of photos from my cancer journey. That journey began in June of 2014. As I started to look through the photos, I became overwhelmed. Although it's been almost 5 years since my diagnosis, it seems like it was only yesterday. 

One of the photos that particularly impacted me was a picture of my naked torso. In that photo, I'd already had my breasts removed and had almost completely healed from that surgery. The photo was taken at the radiation clinic and the staff had just completed their "mark up" for my scheduled treatments. The dots and lines they'd applied with a Sharpie marker wouldn't stay on permanently but they'd stay on through the first couple of treatments. 

I remember well the day they began to mark up my body. They'd made a fiberglass mold of my upper body for the linear accelerator to insure accurate positioning every time I came in for treatment but then, they'd also explained, the need for markings to help line up the beams of radiation. Without them, some of my vital organs could be damaged. 

Radiation was difficult although I didn't feel a thing while going through the treatments. There were no sharp pains, no ill side effects other than some extreme fatigue and the burns I acquired about halfway through treatment. But later on, down the road, the doctor discovered I'd received some damage to the lower lobe of my right lung. They'd done everything they could to avoid damaging my organs but they could only control the radiation to a certain degree. I'd been warned in advance that the possibility of some residual damage was possible. 

As I looked at the photos of the radiation therapy, I could feel those feelings all over again. The feelings of embarrassment at having to bare my chest to even more people than I'd already done and of the feelings that cancer would never end. I was very down in the dumps during that time and feeling pretty hopeless. It wasn't good. 

But then I flipped through more photos and came across the ones from my first few cancerversaries. We'd had cake and family had come to help me celebrate those important milestones. Those were extremely happy memories and as I remembered those days, I was thankful. 

There were also photos of special trips we'd made to the beach and photos of my new boobs. I'd tried to document every aspect of my journey so my children would be able to look back one day and see how far I'd come. Some of the photos were extremely serious and some were overwhelmingly hilarious. 

Taking a walk down memory lane through Cancerland today was interesting. I'd forgotten about some of those moments but the photos helped remind me. As I looked back, I didn't lose sight of where I am now and I didn't find myself bumping into something that was going to cause me physical pain either. 

It's good to remember where you've been and how much you've overcome. Fighting cancer isn't easy, in fact, there are many, many lessons we learn along the way but some of them aren't realized until we glance back and face reality. 

Breast cancer hasn't been a total negative experience for me. I've learned many things along the way and some of those things I would have never learned were it not for this major health challenge. 

Along with being an "accident waiting to happen" as my mother always called me, I'm also a Pollyanna. My rose colored glasses help me find the good in both the past and in looking toward the future. 

I won't forget where I've been and I certainly won't forget where I'm going. Although I don't have an exact destination here on Earth, I know I'm moving forward one day at a time and that's good enough for me. 

Journaling the Journey

How can a six letter word wreck your life in a heartbeat? You might not think it could, but I assure you it can. When I heard the word CANCER, my life, as I knew it, was turned upside down and inside out. I knew from that point forward nothing would ever be the same. It’s been 984 days since I received my initial diagnosis and it still feels like it was yesterday.

I can still feel –

…the crispness of the white paper underneath my legs while sitting on the exam table

…the weakness in my knees as I walked out to my car

…the wetness of tears staining my cheeks as I cried all the way home

…the tremor in my voice as I shared the news with my husband

…the icy cold gel poured onto my breast as the ultrasound tech prepared to test

…the horror at seeing the mass on the screen

…the sharp needle piercing my skin as the first biopsy was taken

…the excruciating pain radiating across my chest after surgery

…the uncomfortable pulling from dangling drainage bulbs at my side

…the shock and disbelief as I looked at my mutilated body in the mirror

And over those 984 days, I’ve experienced more than I ever dreamed I would. I’ve seen and felt more than I can say. It seems like another lifetime ago but it will only be 3 short years this June since I heard the dreaded words, you have cancer. Some of my feelings and experiences are very fresh in my mind and others I’ve carefully tucked away. Some too private and painful to share but others I think might be helpful to those newly diagnosed and that’s one reason I’m so thankful I began recording my journey on the day my life changed.

It started out as a way to process my feelings. I needed a safe place to share my thoughts, a place where I wouldn’t be judged or criticized. I started writing daily in journals but soon that became tedious. I wanted a more creative outlet so I began blogging. It was much easier to sit at the computer and type up my thoughts. I could add photos, media, and tags to my posts. If I wanted to share them I could. If I didn’t, I could mark them as private.

After the first couple of weeks, writing on my blog became cathartic. I realized, when I was blogging, it was like talking to an old friend. I looked forward to recording my thoughts and feelings.  At the end of the first year, I read back through my posts. I was amazed at the rollercoaster of emotions my life had traveled. I’d had so many bad days but the good days seemed to have outweighed the bad. I tried to be open and honest in my writing. I wanted my children to read through my posts one day and understand how I’d learned to deal with the hand cancer dealt me. I wanted them to know the reality of my pain but also the joy of my triumphs.  

I made a point to chronicle my treatments and used my cell phone to document tests, take photos of facilities and medical professionals. I always made sure to ask permission before taking photos of doctors or nurses and made sure they were okay with me posting the photos on my blog. I didn’t meet any resistance, in fact, all of medical team wanted to be included in my online journey! I was grateful for their willingness to participate and laughed as they made sure I captured their best side in the photos.

Keeping a record of my cancer journey was extremely important to me. I never thought it would be anything other than an online place for my personal notes and a place for my family to check for the latest updates on my medical care but, I’ve found it to be much more. I’ve recently been contacted by people from several countries asking for help or advice with their cancer care. They’ve read articles I’ve posted about various things I’ve experienced or alternative therapies I’ve tried and they’ve reached out. It’s blessed me to know things I’ve struggled with on my journey have helped others.

Journaling, blogging, and even video blogging (vlogging) have become very popular among the cancer community. Some find it a helpful way to keep records of surgery and treatment while others use it as a means of keeping friends and family updated. The breast cancer community is wonderful about sharing helpful tips and advice with the newly diagnosed. By keeping records of our journeys we not only help ourselves but help others.

Sharing personal information in an online format isn’t for everyone. Some people don’t want to share such private things with others and that’s understandable. For those not wishing to share, perhaps keeping notes in a personal diary or journal would work best for you. For those who find blogging a creative outlet, as I did, there are many websites hosting free web pages. For those more skilled at social media, or those who enjoy keeping a video diary of their journey, there are also places to post free vlogs on the internet.

Everyone has their own way of coping with a cancer diagnosis. Journaling may not appeal to you. But I needed to blog. It was very helpful to me. I continue blogging about my journey today. When I was first diagnosed, my blog was http://journeyintopink.blogspot.com/ and as I began to move out of the treatment phase of my journey and back into life, I moved my blog to another site http://journeyintopink.blogspot.com/  At the end of each year, since beginning my blog, I’ve had my blogs printed into hardback books (offered as a service to bloggers from another online site). These books are now a permanent record for my children and grandchildren. It is my hope, that one day, they’ll take the time to read every entry and realize cancer was the most difficult time of my life, but also the one that taught me the most. 984 days, and I’m still here.  Tomorrow will be 985!