Cancer Ghosts of the Past, Present, and Future

My ghosts are what may typically come to mind when you think “cancer.” Mine do not just slip into my mind when I have a spare moment to stop and think, or when I feel like something is missing. My ghosts like to be in my face at all times, like constant, annoying reminders. They are very real characters in my everyday life.

They are almost as real as people, and they each have their own personalities and needs. They are a part of everyday life for me and are present throughout the day. They influence the decisions I make and impact the way I am able to live my life. Some of them have a louder personality than others, while some are boisterous and obnoxious. Others are quiet, and some have a constant need for attention, and so on. And you never know when a new ghost may decide to drop by. Some of them, in true ghost fashion, think the middle of the night is the perfect time to make themselves known.

There are days where I wake up and I know that these entities are going to be pestering me all day long. Those are the days where I just wish I could borrow a better working body for a bit.

Most mornings, my first ghostly “visitors” are body pain and stiffness. I do not mean in one specific spot, but rather it encompasses various joints, muscles, and the spine. As someone with chronic illness and conditions, there are days when my whole body refuses to function and I can barely even move. The ghosts that appear the most include: late effects related to surviving neuroblastoma, myelodysplastic syndrome, and acute myeloid leukemia; advanced spinal disease, including kyphosis (also called hunchback); advanced joint degradation with many replacements; muscle graft versus host disease (GVHD); and many others. Some of these ghosts like to travel in a pack, and just like siblings, they know how to get on each others’ nerves and how to easily annoy one another. The pain that accompanies these ghosts serves as a constant distraction, almost as if someone were having a full-on conversation directly in my ear.

The worst of the pack is my hip, though. While all of those factors affect how I think, the way I walk, move, and my comfort level, my hip is the biggest offender. Prior to my hip and joint disease and my bone marrow transplant, I was a decently functional person, who could at least get by. I developed an advanced and unusually severe case of avascular necrosis, and almost every one of my joints began crumbling away. To date I have had six joint replacements and many other surgeries. I did not know that I was in the beginning stages of this disease until early 2018, when a chair rolled out from under me. I landed directly on my backside, which provided enough force for my hip to fracture. Fast forward to August and I contracted MRSA and sepsis, which then proceeded to travel to multiple joints, causing the most wreckage in my hip. Almost six years after the surgeries, different therapies, and increased bone formation, there has been very little improvement. The hip has been a thorn in my side, and it affects the way I am able to sit, stand, or walk, both due to pain and muscle removal.

My spine ghost and I go back the furthest, since I was eight years old. One of the two tumors that I had was throughout most of my thoracic spine and the damage left by it—in addition to the lack of follow-up care—has left me with a curved spine and neck, also called scoliosis. I also have kyphosis, and these two conditions were worsened by multiple compression fractures and a collapse to that area of the spine. It holds me back every day, and I literally see life from a downward angle! The hunchback means that the neutral position of my head faces toward the ground. When I lift my head to talk to someone, I am in an awkward position that can become strenuous and quite painful after even a short while. This ghost likes to consistently remind me that I need to change my head position to take pressure off of my back.

One of the most challenging and frustrating ghosts to come to terms with is the one related to cognitive function. Imagine chemo brain on steroids! I contracted toxoplasmosis, and I had untreated toxic encephalitis for months. Between the aftereffects of the toxoplasmosis and the pain rearing its ugly head, sometimes my mind will go blank in the middle of a sentence, almost as if being “wiped clean.” It has been incredibly frustrating to be in conversation and not be able to keep up. Or when put on the spot, I may take a while to answer. My favorite difficulty, however, is trying to stammer over words to find the ones that I am looking for, as if half of the English language has just ceased to exist in my brain. I also deal with forgetfulness to the point that if something is not written down, chances are that I am not going to remember it on my own!

One quirky ghost that likes to pop in is my coordination “mismanager” that loves to make me throw things and make me fall. No matter how careful I am, I am sure to drop at least a dozen things in the span of my day. It is mostly due to muscle spasms. Nothing is more fun than being in a grocery store and sending something flying!

One ghost that has been the hardest to cope with is the loss of my independence and now being in a fragile body. Having to rely on both mobility aids and others for help on a regular basis is something that may seem easy but it is something that I still struggle with. This ghost goes hand in hand with another I wanted to mention, which is the one that reminds me of what so many others get to do, but I will never be able to achieve. I thought I had time to do all those exciting activities! One thing that I really wish I had the chance to do more of was to hike and explore, as well as horseback riding. What I wouldn’t give to be able to go out on a nature tour now! Yet, I do my best and am thankful for the technology that we have today because I have found happiness in nature and animal documentaries that get me closer to wildlife than I could have ever hoped for in the past!

The inability to do so much takes me right back to when I was a child and had to sit on the sidelines during more than half of my gym classes while everyone else was able to participate (I only have one kidney because my neuroblastoma tumor was where the other kidney would have been. As a result, I was unable to participate in contact sports because of the risk to my single kidney). I felt so out of place and was always wondering what everyone else thought of me while I would just watch my peers enjoying themselves.

One last ghost that I would like to discuss is one that tends to catch me off guard and that I can usually hide away. One of my dirty little secrets that I tend to hide pretty well is the severe scarring that I have all over my body from my collar bones to mid thighs. They are there for a variety of different reasons, but include: the scars from my first two surgeries to remove the tumors from my chest and spine; extensive stretch marks from the steroids I was on (I gained close to 80 pounds in a few months!) that cover everywhere including my abdomen, underarms, thighs and more; my dozen or so central line scars; and countless joint replacement and joint surgery scars.

My tumor removal scars have been with me the longest. The first one is a 16-inch band that wraps around the side of my rib cage from the front and is tucked right below the inner side of the shoulder blade. This was from the thoracotomy, where the giant tumor was removed. The second scar is much smaller at six inches, and it is located on my upper spine. As a child, little “Sarah the Survivor” was quite fierce and determined not to let the scars change the way she was seen. And that fierce child was proud of her scars and what she survived. I do think having scars from the time I was young has helped me cope better with the extent of the scarring I have now, and I have learned that acceptance of my appearance comes from within. I wish I could have stayed completely true to that child. One thing I told myself back then is that I would never let my scars dictate my self confidence and the clothes I choose to wear. There are times that I see my reflection and am almost disgusted. But then I remind myself of how far I have come to even get to this point, as well as the number of obstacles and barricades I have smashed through with this “broken” body. Those thoughts make me feel better!

And with the bad voices there are also the good ones, as well as happy times and distractions, which includes two rabbits. There are the voices that remind me of how far I have come. In the six and a half years since my brain injury I have come a lot further than I would have thought possible. In addition to the other constant voices, I have also found and started to use my own.

The ghosts are drowned out by the positives of the people around me who help me cope, especially on the rough days and especially if they do not deal with exactly the same ghosts as me. Yet, I know that they are there to support me and catch me when I fall, which I really hope would not happen because my body cannot take another fracture! Having my cancer community has been so important in healing because I do not have to pretend that my ghosts are not there.

If the “Ghost of Cancer’s Future” would have shown me the life I am living now five or six years ago, I would have never believed it, even with my own eyes. These voices of my past and present have helped shape who I am today and how strong and hopeful I have become. I am realistic that my life will never be what I had once hoped it would be. Additionally, I will always live with disabilities and limitations, and I will always carry these ghosts with me. Yet, I will also carry hope and happiness as well. And if my ghosts are here to stay, the least that I can do is invite them to the party that is my life!