Another day as usual...in the waiting room

Well, today I woke up entirely exhausted again. This has been going on for about a couple weeks now. Some nights I sleep , usually with the assistance of yet another prescription that has taken up residency on my night table. Most nights it's a grueling fight to rest as my body writhes in pain, dripping sweats and just plain insomnia. This fatigue of late is different however. It's the, "I can barely function" sort of fatigue that grips every muscle and clouds my memory. I've had this sort of fatigue before in combination with other things I'm noticing. I've had sudden appetite changes and stabbing pains like lightning on my right side. Of course I've found every excuse to diminish or dismiss these things that have put a sudden brake on my life. For six weeks now, I have been nursing what is believed to be a possible injury although I never noticed a particular event that started all of this pain. I am fairly active and involved in water sports. I race competitively as a part of a dragon boat team and I also practice and exercise nearly every day. I have felt strong for the past several months. Occasionally I even join my husband for a run, although I find that rather boring compared to paddling on the water. We tease each other about which is more boring, paddling on a boat or running. In the end, we trump each others reasons and realize that although it's fun to prepare for a race, I go to practice to simply be on the water. He simply goes out the front door to run for the high and has not yet signed up for a race.

Although I have backed off my workout routine, my back and my ribs continue to hurt more and more. It has grown from annoying to agonizing. At the end of the weekend, the pain was so intense I could not breathe. Concerned about a broken rib or something sprained, I went to the hospital. After the usual x-rays and blood work, I was sent home with pain medications that I already have at home. I took a little time off from practice and rested with medication and ice every night with no change. I decided I wanted to move again and consulted with my doctor. It was agreed that as I am in good overall shape, I should get back to working out and practice as long as I hold back a bit and stop if it gets worse. Well, here I am six weeks later going to PT every other day and finding no relief. After two weeks of doing all the prescribed things I should do to improve, I find myself declining more.

I don't like it when the doctors look at you with concern and order more tests. Tomorrow I go to the hospital for a bone scan. Naturally the thing I fear the most is that cancer has returned. I've read everything about metastatic breast cancer and where it shows up next. As much as I want to find out that there is something more to all of my pain and weakness, I do not want to hear what's in the back of my mind. I suppose many people who have been diagnosed with cancer and have gone through recovery must worry about cancer returning every time there is some unexplained illness or list of symptoms. I know I have put off going to the hospital for a few weeks in hopes that my pain would subside after some PT and rest. No such luck.

And now as much as I want life to return to normal, I am suddenly back to asking my kids to carry the laundry after I was able to bench press their body weight. I have spent the past year working hard to regain my health and strength. I tried this new sport I love weeks after completing my chemo treatments last summer and never looked back. As the snow began to fall, I turned inside working out faithfully until I could paddle again on the water this spring. I have felt good and strong enjoying life again. I do not want life to be interrupted yet one more time. I am trying to be hopeful, but I can't help but worry that tomorrow's tests will tell me what I don't want to hear. I suppose I am hoping that I will feel silly for all of the worry. I felt that way two years ago when I felt all of these same symptoms. "What if I have cancer or something"? And then I shook my head thinking how silly it was to think of such dramatic results. It was surreal the day I received the dreaded phone call with the bad news after a series of tests. Denial is a powerful way to cope before and during cancer. But once you've had cancer, it's difficult to deny that it might return. When all goes wrong with the body, it's the first thing on the mind.

My husband will take off work tomorrow to sit with our children as I go through a very long day at the hospital. My heart is heavy and I am frustrated with grief that I am dealing with these current issues after taking such good care to be healthy. I have little patience for the things that put me down. I fight with anger for my strength and losing it represents something different to me than just feeling weak. Others have been kind and want me to rest and heal so I can return to life again, but I feel helpless when rest yields no results. I feel frustrated when I take care of my body but I don't know what's wrong. I have scheduled my first Reiki session the day after tomorrow. It is the one thing this week that I look forward to as I strain to hold on to positive energy. It will distract me from waiting for the doctor to call after my tests.

I received another compliment about my boys angelic behavior at therapy today. We have a routine when it comes to attending all of my doctor appointments. Bring lots of stuff to do and sit quietly. I am so proud of them as they do not complain and are wonderful company, but I can't help but feel guilty that this has become routine for them. I wonder what impact all of this will have on them in years to come. I witness in them a peace and calm and an early onset of empathy. I see how nurturing they are around my friends' younger children. For them, spending countless hours in waiting rooms, treatment rooms and at chemotherapy has become the norm. At their age, it is all that exists in their recent memory. What it was like "before", has become faded even for me and all but gone for them. Though I'd rather see them busy at play outside, they are content doing the quiet things they can do until I am done. Occasionally we make a special day of it and get treats together at our favorite coffee shop. They like feeling "grown up" holding their hot chocolates while I sip on my coffee in the same kind of cup. I suppose the tradition had its start when a nurse told me long ago that I should try to eat something before blood draws or treatments, and all I could manage was a sweet cinnamon apple fritter. I have not tired of getting those sticky savory globs of dough warmed to go.

I suppose tomorrow will be no different. Comic books and snacks are packed and ready for the long day. We will stop at our favorite spot on the way to the hospital. I will watch my sons anguish over which pastry choice will win over another. Maybe some think that children shouldn't be in hospital waiting rooms. It is not my first choice for them, but as I look back at all the time they have indeed spent with me in these places, they enjoy the simple time we have spent together. They do not show fear toward these places filled with sickness, and when we talk, they mostly remember sitting with me sipping on hot chocolate discussing our plans for when we return home. We take each day as it comes and deal with things the best that we can. I will be at the hospital much of the day and we will spend some of that time together snickering over the funny parts in the comic books. They will not be anxious or fearful and I will say hello to all of the hospital staff I have come to know so well. And so, with all of my worries put aside, tomorrow will be just another day as usual...in the waiting room.

Un-clarity of mind

I was going to write something...but now I've completely lost it. My brain has not been working lately in that capacity. I have been struggling to keep a straight thought lately. Chemo brain? I know many joke about such a condition, but I have become a believer. It seems to be a great excuse anyway for everything misplaced, forgotten or turned upside down. The amazing thing is, I always seem to know where my keys are in the house.

My son came to say goodnight. He likes to stall with a long snuggle and a little story from the day...and another glass of water.

What was I saying? What was I even going to talk about? I have no idea. It's gone. Lost in some part of my brain that was burned away by a chemical cocktail meant for a few cells somewhere else in my body causing so much trouble.

I will continue to write, but for now it has been quiet at the keyboard. Frustration sets in as I stare at the medication bottle I must open every day to ingest the tiny little pill I love to hate. The drugs meant to keep the cancer away. The pill that changes a part of my personality with its not so pleasant effects.

Another part of me works hard every day to remain physically strong. As I accomplish shifting my body toward the shape of an athlete, I am finding the new identity I am comfortable to wear. Pushing all winter has given impetus to my health and strength, but in doing so I have crossed some line into a new world. My goal has been to train for racing with my team. I am a member of a dragon boat team.

Next weekend will be the first dragon boat races of this season for me and my team. Winter has been long and difficult this year and so the excitement builds. I live in the Northeast and so much of training for this sport goes indoors in the gym. Even as the weather breaks, the rivers are high and dangerous. The water shows its unexpected power every day. The surface appears calm, but the power and force of the current lies beneath churning the unknown debris. Cancer works like that. Things look smooth on the surface while underneath there is unseen trouble.

And so, part of this journey is shifting from the gym into the boat to reacquaint ourselves with paddling on the water. It requires respect and focus to disturb the angry force with only a paddle to cut the thick serenity. It has become hot quickly this weekend and there is not enough cool oxygen in the air to keep the mind clear. There is nothing else to think about but to keep in sync with the paddler in front of me. Keep in time. Plunge the paddle into the thickness. Breathe. I hide the fact that my heart is pounding out of sync with my breath, and I become dizzy with the strain. I find the reward in working together and I finally understand it is less about the body and more about the mind.

The clutter of thoughts sinks under the spring current of muddy water. The serenity of motion propels me forward. My body is spent and at times I wonder, why am I doing this? I return the next day and the day after that. It is on the water that I am allowed to go barefoot; to not worry about covering scars. On the water, there is no chemo brain or separate identity. Many professions, many walks of life, many levels of fitness all melt into one effort to move the boat. It feels good to feel strong and move forward. There is peace in letting the mind clear hearing only the sound of the water's wake the boat leaves behind. The journey of healing has taken me to unexpected places, and now the wake is finally settling back into the glassy surface.

Outlook Expressed

The one thing I hear, is the idea that having cancer changes your outlook on life. The first letter we received from a friend when I got my diagnosis of breast cancer contained such sentiment. We were all, not yet 40, with small children, careers, stability finally just beginning to take hold. This friend too, was a young cancer survivor. It was difficult to accept in the moment as we both read the words of the terrible journey about to arrive. Words meant to offer a taste of reality and encouragement. “I bet you and your wife look at life differently now”, he wrote. Maybe that’s true now. Back then, I had no idea what he really meant. I thought it was simply a cliché meant to offer understanding.

I am now a part of a club I never wanted to join. Saying the words, “cancer survivor” does not yet easily roll off my tongue. When it comes at a time in life when I am not yet looking for gray hairs, it is especially isolating as an identity. I thought breast cancer was an older woman’s disease. I felt side swiped. I had a short career. I had young children just starting school. Being thirty-something, everything is out-of-order and chaotic as the momentum of one day bleeds into the next. Reflecting on the words of that letter we received from someone who “got it”, it was finally sinking in how different it was to cope with a catastrophic illness at a young age. He was the only friend we knew our age who had cancer. Even now as I write this, we remain uniquely apart from our peers facing this disease and how it has changed our lives. A support system is what is needed to simply get through the day. At this point in my life, I was the support system for everyone else.

Our children watched their strong mother melt away as my body quickly weakened during treatment. It was lonely at the hospital and especially at the breast care specialist. “How is your mother doing?” asked by a stranger, who was surprised when I got up wearing my plastic ID bracelet. Most of my room-mates at chemotherapy spoke of their grandchildren and they complained of vacations never planned. Their self pity made me angry as I watched their adult children who were my age escort and assist them through their ordeal. There I was, with my small children too young to take life over; my own parents too far away and frail to be of assistance. In the beginning, you get a pile of brochures and booklets telling you what to expect. None of those materials told me how to hold back my tears when my 6-year-old hugged me one morning saying, “I forget what you looked like before the cancer when you had long hair”. Then depression and guilt looms as my 8-year-old son helps his little brother pack his lunch for school while I lay on the couch motionless. I am supposed to be there for them, not the other way around. It was then I realized my children’s ability to cope would depend on taking my lead. I strayed from the usual pity train and began to smile my way through treatment. I’m not saying I took lite of it, but rather I chose to change my attitude and mental outlook. I established stronger emotional boundaries with those that would take pity on me or brought me down. I surrounded myself with those who knew me best and would understand how to lift me. Since then, I have learned to mourn the losses and accept life as it comes. People tell you to keep a positive attitude. It doesn’t always come easy, but it is a choice that has the power to change things. “That’s what he meant.” I realized.

I have certainly had my moments, but one thing I discovered as I faced all the difficult treatments was that people smiled back when I smiled. Others felt inspired and encouraged as I shared my new outlook. I received many positive notes and a new cheering section began to form in my life. I shared this with my husband and my sons which served to strengthen them. The reflected smiles boosted my strength. I watched my sons cope without fear and their resilience connected us with roots of an oak tree. The language of self-pity was absent in our home and our positive outlook expressed daily.

That first letter is rooted in our souls. I remember wondering how they dealt with work and the kids. Now we are forever connected in this ugly experience. It’s all those little things in everyday life that we take for granted; when suddenly we cannot do those simple things. It forces us to think upon our mortality. It reveals our true vulnerability and the fragile nature of life itself. Everyone warns you when you have children, “they grow up fast”! That has a whole new meaning in the face of cancer. The resilience my children have shown propels me forward. I realize they are much stronger than me and I have learned to shift my outlook on life to the wise innocence of a child. We now leave the dishes in the sink and cuddle up to a good book. Cancer interrupted our busy lives. My children taught me to focus on today.