What Are the Ingredients In Your Shit Sandwich?

As a cancer patient, I live in a weird world.  Something about the word cancer throws people into a tizzy.  As soon as I tell someone that I deal with cancer, I get the feeling that images of the bald, gaunt, hooked to an IV pole patient comes to their mind.  To that person, I become the image of walking death. And that is how the person I'm talking to begins to treat me.

"Oh, I'm so sorry," the person might say, pity filling their eyes.

Or the person I'm talking to might not say a thing, but their behavior will change. 
Every time I see that person, they'll ask, "How is your health?" That's the most common question I'm asked by this type of person, as if I am living, breathing medical chart waiting to give an update on my health status. My health becomes another person's obsession, the only subject they deem worthy of conversation with me.  Frankly, I'd rather talk about ice cream, movies, even the ingredients of asphalt vs my health. The only defense I've found against this question is, rather than answering, to simply ask, "How's YOUR health?" They get the point.

Here's the irony though. Many people in my life deal with serious medical conditions. I am in that age group of above 50 so this is a part of life.  Fibromyalgia, ruptured/herniated discs in the back causing unbearable pain, brittle diabetes resulting in neuropathy, blindness, amputated feet. These are disabling conditions, often taking a person down to their knees, removing all or most quality of life.  But still, when I talk to someone from this suffering group, I'll hear statements like, "Oh, but I don't have it as bad as you do."

And I'll think, "Sweetie, you have it far worse. My pain is minor at this point, and I still get out of the house. You, on the other hand, are crippled by constant pain and entirely house bound."

I've tried to explain to this group that I am not identified by cancer. I deal with it, but I have a life as well. But to no avail. The comments continue.

Finally, the other day, I was talking to a friend whose condition involves constant, unbearable pain.  We were actually talking about her health, which is understandably a consuming topic for her (pain does that to you). But, after talking about neuropathy so painful she can't stand the sheets to touch her feet, yet another surgery to fix deteriorating muscles in her hands and feet, and other pain-filled issues, she felt compelled once again to say, " Oh, but I don't have it as bad as you do."

I was ticked. Once again, the cancer concept put me in a separate group in her mind, the dying group. In my anger,  I quickly blurted out, "The truth is we both got served a shit sandwich. Yours is just filled with different ingredients than mine." She paused and she finally agreed.

There it was. The truth I'd been trying to tell people for a long, long time. I don't have it worse than anyone else who deals with a serious, disabling condition. We all have it the same.  We got served a shit sandwich, the ingredients just are different. And life being life, everyone eventually will be served with a shit sandwich. That's how aging and health works.

I'm not sure if my repeating the shit sandwich statement will make a difference in how people talk to me once they find out I deal with cancer (notice I do not say I have cancer but instead I deal with cancer). Mostly it felt good to say this in response to yet another "you have cancer so you're out of luck" generalization. Mostly I avoid telling people about the cancer. Saves me time. But there are times where I have to tell people or they already know, so it's nice to have a response at the ready.

Cancer is not worse than any other of the many horrible conditions out there. It's about what is happening at that time in that condition.  I have good days. I have bad days.  I have friends with chronic pain conditions who also have good days and bad days.  We have that in common. And that's what I wish people would focus on instead, what we have in common.

Cancer is horrible, but it's just a disease. I'd rather focus on the day I'm in than on the image of myself dying a horrible, suffering death. Helps me keep my sanity.  So if you are lucky enough for me to take you into my confidence and I tell you I deal with cancer, rather than focusing on the image of cancer death that you may have in your mind, pay attention to what I'm saying about my life and feelings instead.  Because remember, eventually, we all get served a shit sandwich. The ingredients in your sandwich will likely just be different than mine.

R-E-S-P-E-C-T the Patient

After 7 years of living with metastatic breast cancer, I can say that I am now what they call a professional patient.  I have seen most everything, various rules, procedures, protocols cancer centers observe. But past that, I am also a regular human being.  I have a job, a husband, four dogs, two cats, a very active social life, and an extended family. A life.  I juggle that life with multiple doctor appointments, treatments, and diagnostic tests. Sometimes this can be a challenge.  I am lucky in that my previous and current bosses have been very understanding of my need to run to appointments or take time off for medical needs.  (Many cannot say the same.)

Still, managing numerous appointments with work obligations, family, and friends is a challenge. And lately, the challenges have been increasing.  I recently switched oncologists with the goal of working with a doctor who would listen to and respect my goals in treatment. This was a good move. With that move, though, I've had additional appointments so I could be introduced into the new system. Along with this, I've been newly diagnosed with portal hypertension, requiring yet another doctor appointment be added to my roster.

Learning this new system has been demanding at times. There was the run-around of discovering I could not print out the order for my tri-annual echocardiogram from the electronic records system to give to my cardiologist, who is not in the new hospital's system. This took a few hours and several misinforming phone calls, but I finally got it. I now know to ask for a print-out of the order from the doctor as she orders the echocardiogram. Lesson received. Learning the procedures in a new setting takes time. I catch on quickly. I expected this. Par for the course.

Today, though, took the cake. After I left my oncologist's office, I received several emails from the electronic records system indicating appointments were made on my behalf.  I'm not fond of people making appointments without asking me, but in this case they were appointments for infusions scheduled every third Friday at 1:30 pm (a day and time I'd requested ahead of the scheduling). The appointment I did not expect, however, was a visit to the lab for a blood draw at 11:45 am on the day of one of my 1:30 pm infusions, a time almost two hours before the infusion.  Accepting this appointment would mean I would have to use two extra hours of my sick leave, and after I would be stranded at the hospital for at least an hour and a half before the infusion.  I called the cancer center and asked if this appointment could be moved to my 1:30 pm infusion time, since the nurses tend to draw labs from my port. Nope. The scheduler insisted this was the way they did things and if I did not have the draw done at least 45 minutes in advance of the treatment, I would not receive the treatment. She insisted I would have to arrive for the 11:45 am lab appointment or else.

WTF? Show up two hours early for labs? In the past, the nurses drew the blood from the port, and the first results came within 10 minutes. If the basics were good, we went from there.  I expressed this thought and was again met with a wall.  After several minutes, the scheduler blurted she'd have a nurse call me, so I happily hung up and waited for that call instead.  Fifteen minutes later the same scheduler calls back and tells me, it is what it is, but they could move the appointment 10 minutes later to 11:55 am instead of 11:45 am.

When she asked if I could make this time instead, my reply was a simple, "I'll do my best."

Translation for "I'll do my best?"  I'm coming at 12:30 pm.  You said they needed the blood 45 minutes in advance, so I'll give you an extra hour. But I refuse to let you dominate my life by requiring me to waste two hours of my time because you want a two hour cushion.  I have a life and just because I deal with cancer, and will deal with cancer hopefully for years, does not mean I'm giving that life up in order to make you happy.

Frankly, I'm just stubborn enough,that if they refuse me treatment based on my not arriving two hours before the infusion, I'll go ahead and kick it, doing so right in their reception area.  This would be a spectacular advertisement for their cancer clinic.  I'm at the end of my rope with all of these extra appointments and rules that devalue my time.  Don't piss off a cancer patient who's at the end of her rope, because she might take you with her.

These little things, time-eating bureaucracy moments, matter.  I deal every day with a life-threatening disease, but I am still living my life.  Sitting in a hospital for two extra hours just because the scheduler says so chips away at that life.  Do not ask me to show up two hours early just because.  Print out that order for the echocardiogram and hand it to me, instead of forcing me to spend two hours calling multiple people in your organization only to find out I need to come back to the clinic for a hard copy of the order. Do not tell me that the requirement to add people to my HIPAA consent form, allowing loved ones to talk to my doctor about my medical needs, is that those people must come to your hospital in person in order to show their ID to you.  Some of these people live in Wisconsin and Minnesota, not in Washington, DC.  Rules for rules sake are simply a way to suck the life out of people who are already trying very hard to stay alive.

Respect my time. Whether you like it or not, I am paying a great deal of money for your service and for your doctors' and nurses' expertise.  Even if you've come to see yourself as the one with power in this relationship, ultimately, you are not.  I can move my business elsewhere. I can speak to someone higher up about how these crazy, odd rules affect patients.  And most importantly, I can choose to stand stubbornly in front of your desk, making YOUR life difficult, because that's the kind of people I come from.  You may outlive me in this exchange, refusing me treatment due to inane, burdensome rules. But you will be left with my dead body laid out on your desk, a smile of sick satisfaction on my face, and moving that stubborn dead body will be a bitch. I promise.