Patient Experience: Day 21, "Which Road Do I Travel?"

Tuesday October 15th my father was scheduled to meet the oncologist at 2:30pm. My fathers morning begun a bit earlier when he awoke at 1am with a bit of pain. He finally decided that he needed to take a pain pill and hopefully get some additional sleep. It was the first time he really took a pain pill in 10 days, since he worries of the “addiction” that could come with taking pain pills.
My morning started similarly, with an early morning emergency of my own at 4:30am. From there my day just continued down a spiral between the rain, driving 2 hours to work, not having a laptop, once getting my laptop back not all of my files being recovered, needing them for an officer of the company for a meeting, and just getting worse by the moment.
I was worried that I may not make it back, however I was early enough to stop at my parents before the appointment.
As we walked out the door, my father turned to me and said, “I am just going to ask him, am I going to live or die? If I am going to die, I am not going to waste all of this money on treatments.”
My response was along the lines of, we just need to go in and listen to what the physician says based on your information and the questions we have.
We arrived at the appointment and the nurse took us back to draw some more blood from my father. She was the first one to find the vein, hit it, and get blood immediately since all of this began. No additional pokes. One and done. So far so good.
My father is weighed and his weight seems to be leveling off. Two things so far so good.
We proceed into the exam room and the nurse proceeds to go over my fathers information to ensure that nothing has changed and that they have all of the information correct in the system. (they are currently working through migration on the clinic side to Epic where the cancer center and hospital have been using it for a bit longer) Medication reconciliation, done. Three down. So far so good.
The medical oncologist comes in, introduces himself, the nurse navigator, and we introduce ourselves. My father is to my right, my mother to my left, I stand behind them both.
The physician begins to ask my father how he is doing, does he know why he is there, and what he understands of his diagnosis to this point in time. My father begins to explain that he has recently had some pain over the course of the last evening. He took some pain medication last night at 1am. He was able to get some sleep. He reiterates that when he saw the GI surgeon they mentioned that this is a slower growing cancer. He also remembers that the GI surgeon also said that he may be a surgical candidate.
The medical oncologist looks at me a bit puzzled. I fill in the gaps and inform him that based on a CT without contrast, all that was found was a lesion in the pancreas. That is when the GI surgeon made his comment about being surgical candidate. As for the slow growing comment on pancreatic cancer, I have no clue, so that is a wash.
The medical oncologist begins to move forward with his story and inform my father that he has pancreatic cancer. It is in the tail (left side) of his pancreas. He explains that his cancer was also found in the liver. The pancreas and liver are not physically connected, so either pancreatic cancer cells traveled to my fathers liver in the blood or in the lymph nodes.
The medical oncologist proceeds to explain that you have Stage IV pancreatic cancer that is also now in your liver. This is very bad disease. It is aggressive. It is mean.
We have 3 options for you:
1. You can have 5FU. It is a very aggressive chemotherapy. You will have a lot of side effects. The side effects will make you feel worn down, tired, nauseated. You will be at risk for bleeding and getting infections. You may lose your hair. The clinical benefit is that it may give you an additional 4-5 months.
2. You can have a gem based chemotherapy. It is a moderate type of chemotherapy. It has the same types of side effects, but they aren’t as intense as they would be with a 5FU based chemotherapy. The clinical benefit is another 1-2 months.
3. You can do nothing. Allow the cancer to take its course. We will work with palliative care, hospice, and home health to ensure you are not in pain, you are comfortable, and that we manage side effects as they arise from your cancer.
My fathers response is what about surgery?
The medical oncologist looked at my father and said, I am sorry, but they are not going to operate on you. You have Stage IV pancreatic cancer. It has spread to the liver, and even if they did operate, it would be very invasive.
My father asks, “So just tell me doctor, am I going to live or die?”
The medical oncologist leans in, looks at my father in the eyes, and says, I am sorry to deliver such bad news to you, but you have 6, maybe 7 months, if you do nothing. If you do the less aggressive chemo maybe 8 months. If you choose the more toxic chemo, it has shown to extend median survival to 11 months.
The nurse chimes in, doctor his heart rate is 125.
I listen to my fathers breathing as it quickens and becomes more shallow. He wipes his left brow and I can see the perspiration on his hands. I look down and his right hand clutches the arm of the chair. I glance at my mother and she is stone faced.
My father licks his lips, as he begins to speak there is a slight shake in his voice. I thought the surgeon said he could operate. The medical oncologist replies and says, they will not. I have been speaking to the other physicians, and they will not operate.
My father looks as my, wipes his right brow and again I see the perspiration on his hand.
I speak, “Dad they surgeon made a comment based on the information he had at that time. Now that they have all of the information, they are telling you what your options are, and what the time associated with each option may be. However, this is an average. It could still be more or less, it just depends on your body.”
I ask, can you go over the quality of life with each option, and include surgery as well to explain to my father.
Again the physician goes through each option, and with it, the list of potential side effects, their intensity, the potential outcomes, and the benefits.
Essentially it can be summarized as:
1. More lethal chemo, worse side effects, may get additional 4-5 months, but those additional months may also be spent dealing with side effects. You will also have to have a fanny pack with an infusion pump inside of it. You will need to wear this for 48 hours at a time. After the 48 hours, you will need to come in and be disconnected. We will repeat this at least 4 times, and then get additional imaging.
2. Moderate chemo, less intense side effects, additional 1-2 months, help with some control of the disease progressions, better quality in the additional time you receive. There will be no need for a fanny pack. You will come in, have a port placed, we will give you the chemotherapy over an hour to an hour and a half. You will go home with nothing.
3. Surgery: one of the most intense surgeries still performed is going inside the body and removing the pancreas. You will most likely be in the hospital for at least 5-7 days. Recovery will take some time. You will eventually go back to normal life activities, however you still will need chemo for the liver lesions.
4. Do nothing: the cancer will continue to grow and spread. You will begin to have worse abdominal pain, but we will be able to keep you comfortable so that you are not in pain and that you are not suffering.
My father coughs. Again he wipes his brow, perspiration beads onto his hand. I can hear the wheeze in his breathing. I can feel the heat in the room. I begin to hear the ticking of the clock in the room.
The medical oncologist says that they have things prepared and ready to go.  If my father wants to proceed they can have the port placed tomorrow and he can begin chemotherapy immediately.
My father takes a deep inspiration. My father says, “Thanks doctor. We will go home and discuss this as a family. We will call you with our decision. ”
We get copies of all the medical records. We walk out the door. My father decides to walk down the long hallway instead of going to the car immediately to find a restroom.
My father turns to me and asks, “What do you think I should do?”
I respond, “I do not think that you will enjoy the side effects of the more intense chemo. I do not believe that the benefit gives you the quality of life you want. I think its off the table.”
My dad agrees.
I reply, “I do think you should try the moderate chemotherapy, that is gem based. You always told me you never wanted to say ‘if’ because that is the biggest word in the dictionary. You also always told me that it never hurts to try, you have nothing to lose. So why not just try, you can always stop.”
My father exits into the restroom. My mother looks at me and her stone face turns to warm red tears. I walk across. I embrace her with a hug. I tell her that we are family. We can get through anything life throws at us. We will endure this too. I feel her shake in my arms.
We hear the running water.
My mom wipes her tears.
My father walks out and back towards the car. He says, “Let’s go home. We can discuss what is the right thing to do as a family.”
He gives me a hug and says thank you for all you are doing. I tell him I haven’t done anything. I am just hear to guide, to help, to be his voice.
As I sit in my car, I watch as my parents drive away from the parking lot. They turned to the left, I turned to the right.
Another page in my fathers story turns. I sit and ponder, which road will he take?
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
#PtExp #PX #cancer #hcldr #hccosts #hcsm

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