17 Oct Patient Experience: If She Can Handle It, So Can I
It is Thursday, day 23, of my fathers experience into the world of cancer. Today he begins to write about his own experience in meeting chemotherapy; seeing the relationship they will develop, and the style of dance they will embark on together.
I look at the clock and it says 2:30pm. A manager walks into the office and asks how I am doing. I respond by saying I am hanging in there and just taking it a day at a time. I tell them that by now my father should have had his port placed, the first chemotherapy treatment should be infused, and he should hopefully be at home watching the news. They are all hopeful as am I.
I stop at a local grocery store to pick up a freshly made treat for my father. I hop in the car and begin on my way to my parents.
My phone goes off as I am about half way home and it is a text from my mother. I glance at it quickly. It reads, “Dad did not have port or chemo. Was sick about 9:00 last night.”
My head spins and the positive thoughts flush from my mind. I dial my mom’s number. She answers. I begin to ask her what is going on with dad.
My mother responds, “He woke up last night with sweats. You know the plaid pajama bottoms he usually wears? They were completely soaked. His hair was wet. He was perspiring profusely. He was nauseated. I was able to get him to drink some warm Squirt and get a pain pill. He was able to sleep until about 3am. He awoke, walked around a bit, took another pill, and went back to bed until about 6 or 7 this morning.”
I inquire, “How is he doing now?” My mother gives me the run down that he ate a bit of food, had some soup, and is able to keep fluids down. She canceled the appointment because my father wasn’t feeling up to all of it. She then tells me that she called and spoke to the nurse and they encouraged my father to make an appointment with his primary care physician.
I respond, “What? Why is the medical oncologists nurse punting the management of his sweats to his primary care doc?” My mother informs me that the nurse said since my dad didn’t start treatment that it might be better for the PCP to follow up.
Enraged I say, “You call the nurse and tell them they will see dad. No offense, but the PCP doesn’t have the bandwidth or the expertise to manage dad’s care. The medical oncologist needs to do it.” My mom agrees and says she will follow up.
As I arrive and walk into my parents home my mother comes walking in to greet me. Slowly and delayed, my father walks in and takes a seat at the table. His hair is disheveled, still a mess from the night before I presume. His right hand is shaking. He wipes his brow with his left hand and I see the perspiration on his hand. I ask how he is feeling.
My father whispers, “Oh not to bad. I am feeling better than I did last night. I just have these episodes of getting really hot and sweating. I am eating a little bit. Although it is mainly liquids. I am losing weight. This is how it was for my mother when she was dying of liver cancer. I don’t want that for me.”
I tell my father about all of the possibilities that could be causing him to perspire. Including anxiety and stress. He nods accordingly.
He then looks up and says to me, “You know if your mothers cousin can go through chemo, I think I can handle it too.” My mother responds, “You don’t have to do it if you don’t want to. It is your decision.” My father counters, “No, I really think I can do it. If she can, I can. If I have a bad day, I can just tell them that I can’t handle it and try again the next day, right?” I inject, “Yes. You are in the control. What you say goes.”
My father looks at me and says, “Okay. I think we should call and tell them to schedule it for next week. I just didn’t think getting that thing placed in me (port) and then getting chemo is something my body could handle all at once. But, I do think that my stomach is getting hard and that hopefully the chemo will help that and keep it from spreading anymore.”
I agree with him.
He stands and says that he is going to go lay down. He is tired and wants to rest. I give him a hug. The man that once stood as a giant before me, I can now wrap my arms around and hug easily. I see the physical changes, but feeling them as we hug one another makes my heart accelerate. I kiss him on the cheek. He tells me thank you for the treat, he is going to have it later for dinner. We both say I love you. My father exits stage left.
My mother stands and approaches me. She gives me a big hug. I ask her if she is going to be okay. She says yes. I ask if there is anything else she needs me to do. Yard work, close the pool, anything. She says we can close the pool up, but not until the weekend or maybe the following weekend. She tells me to go home. To rest. To get some sleep.
We hug, exchange I love you’s, and I walk out the door.
Today’s page may read that chemotherapy intimidated my father from hopping on the dance floor. The enormity of change that has occurred in such a short time frame for my father may be what is dominating the headlines today.
Yet I know my father likes to take a different road than most.
He still has plenty to write. Perhaps he wants to make sure his selection in words will convey the message he wants to articulate. He is using calligraphy rather than a computer. I am sure he doesn’t want to make a mistake knowing that he may not have the time or energy to rewrite an entire page. So he takes his time. He pauses to find the right words. He writes them with precision. He will continue his story again tomorrow.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM ~CancerGeek #PtExp #PX #cancer #hcldr #hccosts #hcsm