Please don’t look at my cuticles. They are jagged and bleeding from being picked apart. Eventually, they start to look better, and when they do, it never fails, I pick at them again. The polish is worn down in places. It was green and sparkly at first. I have a hangnail that always needs to be cut and my skin is somewhat scaly on the back of my hands. Occasionally, if I think I need to appear “together”, I’ll go get a mani/pedi, but for the most part, I can’t be bothered with it. I used to be a teacher. I have been told I was a good teacher…even a great teacher. But the fatigue of my everyday life was too much to bear so I am now on “sabbatical”. What that really means is I am still trying to find my way at 39 years old.
Do you remember those days before responsibilities? When you were young and fresh looking all the time? Before the dark circles, stress, anxiety and problems of life started to weigh you down? Well, I almost have no memory of those days anymore. I was a vibrant college student one day, heading for my happily ever after, and the next day the phone call came in. First, it was a cervical dysplasia issue that was scary enough in a time before I had children. Then my skin became as thin as paper, and I would find cuts along my arm that first year in the classroom. Blood would be dripping down my arm and I couldn’t even remember hitting my hand. Then my urine darkened to the color of port wine. I went back to my gynecologist thinking it was something else horrible. He could not help me. By the time I made it in to see a specialist, the blisters had come out. They were huge and full of liquid that felt like burning fire. When they popped, my skin burned. It literally felt like my arms were on fire.
The caustic bubbles started appearing on my hands and some grew to be the size of a dime. The welts would pop open and leave painful scars for weeks and the skin would be tight and itchy where the blisters had been. Did I mention I was getting married? Think wedding portraits. My life was falling apart and I was only 23 years old at the time.
I remember the crinkly paper and waiting for a doctor who I hoped had answers. She appeared worried as she looked at my face, arms, hands, and then asked me if her colleague could pop in. Sure, the more the merrier. He comes in and mentioned he is also her husband. They haven’t seen a case like this…well, maybe ever. The good news is that they happened to write a paper on it in medical school. They whispered in undertones and I heard all kinds of strange-sounding words. Latin or something I remember thinking. Great. Just great. This can’t be good news. They seemed to remember I was still in the room. Since I asked a lot of questions, I got right to the point. Please tell me what I have. They appeared calm as they mention I might have Porphyria Cutanea Tarda, but don’t look it up. Famous last words…don’t look it up. They didn’t know who they were dealing with here. Never tell me what I should not do.
So as I went home and read about this strange new disease, I realized 2 things. One of them was I knew immediately I had it. The other was that my life was about to change in ways I could not ever begin to imagine. I would give pints of blood for the rest of my life also known as “phlebotomies”. I would end up with unique friends who are part of my life forever because I would later find out that I also carried a special gene called the c282y gene for hereditary hemochromatosis, and that was also treated/managed the same exact way. Pints of blood being taken forever…
I decided I was not going down without a fight. I didn’t care how long that fight lasted, but a fight was called for. My friends seem to all feel the same way. Every single one of them…even the ones fighting other battles. We are all warriors, fighting for the things in life that are worth living for.
Diana, you amaze and inspire me daily as you fight to get your life back from cancer…not just any cancer, but the kind no one expects to have at our age, stage 4 colorectal. Living your life as a military wife with 3 beautiful girls, thinking about mundane day-to-day tasks and then all of a sudden, your life was turned upside-down. Being half-way across the country away from your family and friends at a time like that was so hard. I am so glad you messaged your team…your own personal band of warriors fighting alongside of you. From my beautiful friend “Illness is part of our journey. That can’t be denied, but we are still Aimee and Diana. They don’t define us. We define ourselves by how we deal with it. You learn and help others while doing it. I fight and try to have a positive attitude even when I just want to scream. We both live to show our illnesses that they may be part of our path, but we choose where we travel.”
When you sat in a room by yourself, just as I did, you were told something even scarier to imagine…something you were not prepared for. Doctor tactless said “Well, you don’t have pulmonary emboli, but you know you have metastasis on your liver right?” And you had been told they were benign cysts. So you get told they have grown, get handed a box of tissues as if that solves everything, and she walks out. Just like that. The nurse who cried with you has the heart of a warrior. We don’t leave our people behind. I am so glad you had a good doctor after that horrible experience. So glad you have hope. Cancer is a cruel opponent, but you have taken on the armor of love. Your loved ones support you and will do anything for you and I am blessed by knowing you.
So our conversation turned to getting angry about this, and Diana said “Our families are the ones we can do that with though. We know they will still be there after we get the anger out. And boy do I get mad sometimes.” I thought I was the only one. The only thing I ever saw Diana get mad at was a soccer ball. The best part of re-connecting with Diana was when we were talking about a summer school class we took together in junior high. It was on oceanography and basically being around water and we were at the “awkward” stage. I don’t remember the details, but apparently a boy said something to Diana on the bus to one of our field trip sites. She said I stood up and defended her…probably all 5 feet of me back then, I grew a whole 2 more inches, but anyway I guess I let him have it. I’ve always been a bit erm, feisty. Here’s to you my Messy Beautiful Warrior. Our lives might be messy and complicated, but it shows a side of us that was always there. The warrior.