Too Close To Home

Yellow School Bus: Affecting one intimately and personally

She has never left my mind. Whenever I see a school bus, I think about her and her family. 

She had a rare cancer that spread so quickly and it consumed her life. She had two small children in primary school, a first and a third grader. She was a devoted mother and a patient who did everything right to keep going. She traveled 2 hours to get her cancer treatment with her husband after she put her children on the bus. She was not in shape to be out there in the cold but insisted. The chemotherapy regimen was an all-day regimen that required her to be at the center in the morning and leave near dinner time. She lamented not being able to get the kids off of the bus. 

As we age as clinicians, we walk the life our patients walk, not cancer battle, but oftentimes life itself. I have two kids that are the same age as my patient. We laughed about how silly our children were and talked about how it was fun to do homework with them after a hard day of work.

Now, whenever I put my kids on the bus, rarely because the bus comes after my office starts, and see a yellow school bus pass by, I think of her and all those who are struggling with this terrible disease.

Hard To Describe

 This may and may not be related to the patient care...

A few weeks ago, a patient and his son came to see me for a follow up in the early morning. Before I sat down, the son apologized to me as he took a plastic bag out. He started to explain that he has to have breakfast as I start his father's visit. I told him that it was fine. Then his father started to shake his head.

He took out a Styrofoam cup filled with cornflakes and another cup filled with milk covered with plastic wrap. He says. " I wonder, is there a place where I can get a spoon?" I first ask him if he is a diabetic, if he gets hypoglycemic, if he feels alright, etc.... He says,  "I am fine. But my mother packed my breakfast for me this morning as I was leaving with my father. She was worried that I run to work after the visit with empty stomach and made me promise I take the bag and eat them before I get back to work". I smiled as he was rummaging through the bag and found the plastic spoon she packed for him with a smile. She packed something for his father also but it would have to be after his visit with me as she wasn't sure if he could eat before he sees me or not but he also was given a bag with a cup cereal, milk, a banana, and a spoon.

From that day on I began to see his son differently.
He wears a nice suit when he comes in with his father and he is quite polite.
He is a son who is doing his best to take care of his father during his work. He is a son of a mother who does not dismiss his mother's love and effort in taking care of him.

Importants VS Regular Patients

I am quite certain this happens in many well known Academic Centers as well as any hospitals in the world in any business sector.

For those of us in health profession, we do not like being asked by the administration to pay special attention to the VIPs. But what makes them VIPs? Because they support the institution and donate money? Is that how they see themselves or as society ourselves see them as some special breed? Health professionals do not like this behavior. We see patients from all walks of lives and we pay special attention to each and every patient we see. I personally wold not care if my patient is a homeless or a wealthy donor. What I care the most if am I caring for them without bias and am I doing my best.

I am always conflicted when these situations arise in my practice.
If I am defiant, I am sure I will hear an earful of how I did not accommodate this "important patient", I am nice and accommodating, I know I will be sucked into the nebula of unneccessary calls and will be called away form taking care of "regular patient".  I find this to be the most unfair way of treating patients. I am furious when these situations arise.

In a society where we teach our children that every individual is unique and special, why are we not practicing what we teach as adults?????

"Great! Now everybody is mad at me!"

Recently I saw a patient. He was recently diagnosed with cancer and receive one cycle of chemotherapy. His course was complicated by hospital admission do to influenza while his blood counts were down and severe nausea. Needless to say, he was struggling.

He came with his daughter and wife and three of them live together. He is tired to the point where he can't do much but sit or lay in bed. He eats but does not drink fluids which is driving his wife and daughter insane. They nag and nag and get angry at him. They are angry at him for refusing to go to see the cardiologist because he is "too tired to even get out of the house".
We had a long discussion and mostly therapy session to set goal for him that is tangible and explained to his family where he is coming from. At the end of the visit, as they were leaving, he said to me, " Great! now everyone is and at me and I didn't do anything wrong!" My heart sank. I told him that it is not his fault. His daughter and his wife are trying their best but this is also new to them and they cannot understand why he is so tired when he looks so good. I felt terribly for him. Why does he have to feel guilty? He is the one with deadly cancer struggling and facing everyday with it. Of course his family  is also struggling with this issue on another angle. But...

We as clinicians see this frequently. Husbands, wives, daughters, and sons trying so hard to help the loved one who is struggling. But how much is ok? Nobody knows the answer. They are not in their rational state to think strategically like us who are looking in and giving advice. They often argue and fight about how much they eat and drink and not taking enough of the pain medications and that the patient is not trying enough and that the patient is not helping oneself. The patient becomes all of sudden the guilty party and gets angry and defiant. The patient often says, " they don't understand how tired I am and I cannot do anything about it and they are mad at me!" It is hard to find fault in anyone. I can understand both parties. It is such a complex and delicate issue.

We are taught to help patients to participate in their own care and to encourage them to know more and do more. We learn that light to moderate exercise is good to increase energy level during cancer treatment. We are taught to set tangible goals for these patients to meet us half way. But the patients' family nor the patients are informed about these strategies. They inevitably become the naggers and become frustrated and tattle tale to us about the "Bad behaviors" of the patient as desperate measure.

I don't know if this relationship will ever change. Of course with social worker's help and getting to know the family dynamics will help in the long run however not make it "all better".

News That Will Never Be Good To Hear

All of my patients struggle with cancer.
Some have active cancers that require treatments, some that have operated on waiting for the shoe to drop.
I want to focus on the latter part of the population.
I find it incredibly hard to take care of them more than those with active disease.
Comforting them and reassuring them is difficult and when we find recurrence of disease and have to tell them .. That is difficult.
NO matter how well you deliver, it will be bad news.

Into the Storm

It snowed all night from 11 PM and continued throughout the following day and night.
It took me perhaps only 30 minutes more than normal driving time but it was indeed getting quite "bad" out there.  I arrived  at the Cancer Center in the snow storm.  The Cancer Center Control Center recording clearly noted that "it is fully operational" that day.  I knew there would be cancellations but knowing our patients, there will be a decent amount who will show up for their appointments or treatments.

As I got out of the car, there was our parking security officer waiting for me.  She asked me where I was going.  I told her that I was heading into the Cancer Center form the parking lot.  She asked me to be "very careful" not to fall or slip.  " I don't want my nurses and doctors to fall and not be able to see the poor patients",  she said to me.  I felt grateful for her concern and we started to walk together towards the building.  We began our conversation with how the snow was beautiful coming down but the driving in it is just terrible.  She then said, " I wonder if a lot of patients will cancel today or not". My reply was I didn't think so unless it was just a routine  visit.  For those with scan results to go over and to receive treatment would  surely come.  She said she could not understand why the patients are putting themselves in danger in the snow and come out all the way.  Her husband was also a cancer patient in the past, dead or alive she did not say, and she said they argued when the weather would be horrible.  He always insisted going for treatment no matter what.  She could not even convince him for one or two days of delay in treatment.  If the Cancer Center was open, he was going.  She at the end said did not argue but she took him for his treatments no matter what the weather was outside as long as the treatment center remained open.  My reply to her was pretty generic at first.  " I know, it is so dangerous to be out and driving and one or two days of delay in treatment doesn't really matter in the big scheme of things... But they want to be here no matter what. They have cancer and they are focused on getting better."  Then it hit me. It does matter.

As I walked to my office and all day, I could not get that, "it does matter" part, out of my head. I thought about it and thought how careless I was to think that it is crazy that these patients are here putting not only their lives in danger but their drivers' as well.  But it is not that.  They are fighting for life against death.  For them, treatment IS the life line.  Deep in their hearts, they know and they worry about the weather and the road and that perhaps this treatment might not work.  I am sure they feel a bit of guilt by asking the loved ones to take them in for treatments in the storm.  For those of us who are not in their shoes, we are just rationalizing the situation and think "safety first, stay off the road".  But we are not fighting for our lives or trying to live a bit longer to be with loved ones and perhaps just hope to be here for the family dinner on Easter Sunday.
When I was a young nurse, I remember one of my preceptor telling me try not to say, " I know or I'm sure" as empathetic response because we do not know but we can only imagine how they may be feeling. It is true. I learned not to say those two things to my patients when they receive bad news.  It seems almost arrogant to say those words to the patients.

I can imagine now after a long day of thinking, the determination of the patients making their ways to their visits and treatments.

I drove home into the snow storm as our patients would have as well.
I hoped that all on the road got to their destinations safely for they traveled into the storm to get their hope for perhaps another month or another 3 months before the next scan.... or maybe just maybe a hope for that cure.

I was glad to have met the parking security officer that day....

I would not do anything to harm my grandchildren

I met a patient recently.
She is a very sweet elderly woman in her 70's with wide spread cancer head to toe...
She is a retired nurse and quite independent and still takes care of her grandchildren.
As we were discussing her care, we came across the subject of driving.
She was told that day by her neurologist that she cannot drive as she starts radiation therapy to the brain due to possible seizure activity.
We both agreed to it and spoke about it.

Driving is considered one of the respectfully earned privilege we have as we enter teenage years and through adulthood. It is something that is almost sacred that most patients would not give up unless told.
And even after being told to stop driving, some resist. It is their control and freedom.
But this day, she said; " I would not do anything to harm my grandchildren. I will have to stop driving and I will  find rides for them".  She had sad look to her face. She later told me how much she enjoys driving her grand kids to wherever they want to go. She drives them to the mall, movies, etc... She sits in the car and waits for them while listening to the radio. I can only imagine what that feels like and to give that up.

She did not want any chemotherapy or other therapies other than radiation.
She wanted to go back to her local oncologist rather than coming to the city.
She couldn't anyway since she can't drive. 
But she said it was okay. She has a good like and had a good life.
She will enjoy the life she has without struggling to live another day....