When a loved one is diagnosed with cancer, the term "normal" has to be redefined.
When it comes to what my life looks life, I find it fairly difficult to explain. The reason is, in all honesty, there is no such thing as a “normal” day. It differs depending on whether or not my sister is in a hospital, feeling well, feeling ill, at home or if she has clinic. People often ask me, but I do not have a great answer. So, let me try and explain.
The sun is shining brightly through the window panes because, by the time I fell into bed after helping her last night, I forgot to draw the curtains. It is blinding, so I squint in an attempt to see the clock. It’s an early 7 a.m.- not my earliest day, but far earlier than I want to be rolling out of bed. I stubbornly shut my 7:15 a.m. alarm off on my phone, wanting more than 15 minutes, but knowing I won’t even fall back asleep in that amount of time.
It has been so long since I had a schedule, or even for my schedule to revolve around anybody but my sister. I have become so used to endless trips to medical professionals, that my own planner has little to no room for my own appointments.
After getting dressed and cleaning up the living room, I quietly head into her room to wake her for the day. As she gets up and dresses herself, I make breakfast and get her medications ready for the morning. Knowing that if she does not take an antiemetic, the breakfast that I am making will never stay in her. While she finishes eating, I make sure that I did not forget to pack anything that we may need for today.
I make a small note of all the things that I have to do for the day while she reluctantly brushes her teeth. I have to shop, make phone calls, sort medications, do my studies, wash laundry, meet with the physical therapist, dose Vancomycin twice and make sure that we have housekeeping. I know that this list will be far longer once the day is done and we have seen her doctors. I get our “to go” bag, as well as the oxygen that she forgot she needs before we head out for the day. It is only once we’re in the car that I realize I forgot to eat breakfast.
She has never been a fan of seeing doctors. They rarely provide her with good news. When they do, she usually has to be told multiple times before she understands what has been said. Upon arrival, I sign her in and provide all the identification needed for her to be seen. She is in need of nausea medication, but has forgotten something to drink. Once that issue is rectified, we are ready. Into the office we go.
We meet yet another new face, and my sister is clearly not okay with this. Instead of shaking hands and being polite, she is hostile. She keeps looking at me when even the simplest of questions are asked. After I have answered all of the questions asked, we finally see her oncologist. He is quite chipper for the day, and very happy that she has done so well with transplant. I, too, am happy, but she seems to want to be anywhere but where we are. I can appreciate that, because she just spent the last month in a hospital. I also wish that she would appreciate how far she has come and that this visit is a good thing. It is the first step on her road to recovery. I get a list of things that need to be done and things I need to bring for her next visit and we are off.
It is now 11:30 a.m. and she is hungry. What do I feed her? When asked, she rarely has an answer and when she does it is not usually an attainable item. I settle on soup, hoping that she will not be sick from it. Knowing that after she eats, we will be back in a car headed home.
While she eats, I try and make as many calls as I can because I don't know how the rest of the day will shake out. She eats and, to my dismay, is sick shortly after. I help to wash her shirt out in the restroom and by the time we are done, there is no time to do our consult with physical therapy. I make a mental note to call today and reschedule for another time.
Our ride is late to arrive and my sister is running behind on her morning dose of Vancomycin. I pull out all of the supplies and try to create a makeshift sterile place on a table in the lobby. I access her lines and find one with blood draw before beginning the infusion. As I am finishing, our ride finally arrives.
While she has many required things that she needs to be doing, all that she wants to do is sleep. I agree to a nap, hoping that when she gets up she will be more cooperative. I will confess, at times it is easier to give in than argue. I am aware that is not always the best choice, but I have too much to do in a day to fight over everything.
While she sleeps, I am able to cross off most of my to-do list. With only a few things left, she wakes up vomiting. I grab a pair of gloves and a towel to try to do what I can to make it stop. She has barely been able to keep anything down since discharge, and with how much she is putting out, I am worried about dehydration. While she is in the shower, I am changing linens and figuring out what cocktail of medications will not only help her, but that she might be able to keep down.
When we are done, she reluctantly agrees to do some of her physical therapy and I throw the laundry in the wash before dinner. I am not cooking because she is hungry, she would go days without eating if nobody fed her. Not only do I know that she needs food to fuel her, I am realizing that I forgot to eat all day.
I dish small portions of pork chops, corn, roasted potatoes and toasted bread. I hope that she will eat this meal. We sit down, and we start out okay, but about halfway through the meal she is nauseas and I dose Ativan to calm her down and try to help her finish dinner. Sadly, there was no success.
I help to get her cleaned up and I try and give Compazine to no avail. I help her to the couch with a towel and some water before cleaning the kitchen up and grabbing the laundry. I return to find that she is once again throwing up. I make the very difficult decision after only two days home, she needs to go back in. It is a struggle to convince her of this because in her eyes, she has failed.
I gather all of the things that will be required once we get to the emergency department at Presbyterian St. Luke’s. I need our wallets, my phone and charger, computer and the ever-important document stating that I am her medical power of attorney. After I have it all, I call 911 and listen to the now memorized questions of her condition. I stay on the line until paramedics arrive.
Once at the hospital, they ask her questions that she does not have the answer to, and I sound off her latest vitals, why I called, her medications, where we need to go and a brief history of her disease. After a confusion with the paramedics that she has had a bone marrow transplant, not bone cancer, we are ready to go.
We arrive at about 11 p.m. and we are greeted by a crew that we have had before. I help to assist in the admission and triage before they decide that we will in fact be re-admitting. She is upset and crying because all she wants to do is go home. Originally, the goal was a week at the hospital and she could go home. An idea that is simple in concept, but so very hard to obtain in real life.
It is now 1 a.m. and we are being moved up to fourth floor. As opposed to the first time when she was on 3B, she is now post-transplant and will be in main oncology. So many tests are running and I haven’t a clue what, if anything, is wrong. I will spend the next few days with the doctors trying to figure it all out.
When I climb out of bed each day, my one and only goal is to make it through the day. To some, that may seem trivial, but as a caregiver, it is my job. It’s my job to notice all the small things, go with my gut and do all that I can to mentally and physically see that she is okay. Before July 2014, my sister was an independent young woman who did not need somebody to schedule everything for her. Her days were set by her and nobody needed to tell her when and what to eat, to walk or even to take her meds. That all changed when she was diagnosed with cancer. And thus, so did my definition or “normal.”