Thank you so much for your support. I know that I cannot do it without it. Even prayer is failing me lately.
Want to hear the latest? A quick recap: I needed kidney stents. The urologist was able to put one in, but not the other. MY UNDERSTANDING was that I had to see an interventional radiologist so that he or she could go through my back, through the kidney, and place the stent into the ureter. More complicated, but fine.
My oncologist felt it should be done as soon as possible, which would be the week of Sept 26. I was scheduled to go to John of God the week of Sept 26 so I needed to cancel that, which bummed me out. And, given my chemo schedule, that meant that I would meet the interventional radiologist this week, chemo next week, and procedure the week after that. A crappy series of events, but I’ve done harder things.
Their recommended interventional radiologist was not available on that timeline, so I booked with another. Yes, you can see a bad moon a-risin’!
I showed up for my appointment and someone took vitals and left. Fine. A nurse practitioner arrived with a stack of papers that it looked like she would give me at the end of the visit. Fine. She started to talk about this tube in my back. I knew they might do this as a temporary measure while the stent healed. Fine.
But then she started talking about coming in every three months to have the tube replaced and having a home health aide come to my home every week or maybe every few days in between. My head started spinning.
“How long will I need this? I thought it was just temporary until the stent healed.”
“Everyone needs it a different amount of time.” She looked at me sideways.
“But THREE MONTHS? How long does it take the stent to heal?”
Ignoring my question about the stent, she added, “And you need the home health aide. Don’t cancel that.”
I don’t mind a home health aide as a temporary thing. I relied on them to get used to the idea of having a colostomy bag and learning how to care for myself and it. But, despite all these weird things on my body (mastectomy, colostomy bag, tumor coming out of my belly button, a fistula to manage, and a tube coming out of my chest every other week for chemo, to name a few), I kind of like having a place, like my own home, where I can pretend to be a normal person.
Having a home health aide come to my home destroys my little mythical world. Not only that, it is inconvenient. You have to plan your day around their arrival. They are sometimes late. They take your blood pressure, temperature, oxygen – in other words, they don’t just come in, change the dressing and leave. They have a whole intrusive process. And there is a different person every time, so, no relationship. Plus, if I need home health care, I wonder if I will be so sick that I can’t get my butt out of my house and to a medical facility.
But the biggest thing is, a health care worker marching into my house makes my home feel like a treatment area. I hate that.
My more immediate issue, though, was that I felt like the nurse was talking about a different procedure than I expected. She never mentioned a stent. Only going on and on about the nephrostomy tube or bag or whatever.
Since she couldn’t seem to talk about my topic, I thought I would ask her questions about her topic.
How do I sleep with this? How do I dress? How do I live with this? What does it look like? Does it require taping anything to my body? Can I sit back in a seat? Can I lie on my back for acupuncture?
“You cannot sleep on your back because the tube is sticking out of there. The bag, at all times, needs to be below your kidney, so you need to place it before you go to sleep and don’t move around. You will learn as you go,” she said with a confident smile. “Some of those answers are in these papers.”
I get to read about it after I leave? When I can’t ask follow-up questions I guess. And learn as I go? Am I the first person to deal with this?
I’m much better dealing with these life changes if I have preparation. I’ve had enough of those to know.
“I’ll get the doctor,” she said, apparently done with her part of the conversation.
About 10 minutes later, she returned with the doctor. He greeted me pleasantly and I was hopeful. Fool that I am.
He, too, focuses his little speech on a nephrostomy, and I went along with it, following his lead on the topic, asking questions about the procedure and the follow-up.
In retrospect, I had hoped that he would say, “We are putting in a stent, but first we have to do a nephrostomy.” And then go on to describe the multi-step process, culminating in my having my body back without tubes.
But he stays focused on the nephrostomy and never mentions a stent. Hmmm. So I ask him.
“I thought I was getting a stent.”
“This will be much easier. Trust me.”
Oooh. I have never been good with phrases like “trust me.” And after enduring this election year, I cringe hearing it. And, this will be much easier? For whom?
There was so much going on that I didn’t know where to start. Focus on facts, I thought. Maybe something tangible. I studied the doctor’s physical characteristics. He was shorter than me, with dark hair and lamb chop sideburns. He had a tiny diamond earring in his left ear and a wedding band on his left hand.
I took a deep breath and thought, someone, at some point, loved him enough to marry him. They think he is a good guy. Maybe he is a good guy. He means well. Maybe he just is bad at communication.
I really should have brought someone with me.
I decided to take control of the conversation. These are some snippets of the conversation as I remember them:
Me: I thought I was going to get a stent. That you were going through the kidney to put in a stent.
Him: Well, if you really want me to, I can try.
What? I thought. If I really want him to? I thought that was the program….
Me: If I can, I want the stent.
Him: Let’s play Let’s Make a Deal. You want to play Let’s Make a Deal? I can do that.
Okay, what is up with all that? I don’t want him to place the stent as a “favor” to me. I don’t want to try and place a stent if it is going to screw up my body even more. I don’t want to try if it means a useless procedure. I DO want someone to say “It is likely that I can do this” or “Probability is low because…” I want someone to be on my side, to understand how huge this is for me.
And seriously, “Let’s Make a Deal”? Once, okay, weird, but he used it multiple times throughout our conversation.
Here is another….
Me: I’m focused on quality of life. What will this be like to live with?
Him, smiling: This will improve your quality of life.
I’m thinking about the hassle it will be to shower, as the bandage (around the site and is not a temporary thing) cannot get wet. I have to wrap myself in Saran Wrap to shower, and make it quick. I can never again take a bath or go in a swimming pool or the ocean.
I’m thinking about sleeping with tubes and drainage bags and getting out of bed in the middle of the night to pee and forgetting to grab all the bags I need to and having one detach. And what about if I am drugged, which doesn’t happen often but happens often enough.
This was crazy. I started crying, and then I started sobbing. He gave me a consent paper to sign, and a phone number to call to set up the procedure. He and the nurse left the room. And then I left.
Okay, here is another weird thing. I am IN THE OFFICE. With a waiting room and staff and check out people. And the phone number they gave me to call to set up the appointment was THE OFFICE NUMBER. But they want you to call to set up the appointment.
I left the office, took the elevator down one floor, and called the number to sign up for a procedure day. And then I raced out of the hospital.
I paid for parking, found my car, and started sobbing again. I didn’t know what to do, so I frantically made phone calls, including to my oncologist’s office and the social worker, leaving messages for everyone I could think of.
I had five minutes (after paying for parking) to leave the garage, so I started driving. It’s amazing that I made it home. I was heaving sobs as I drove while I talked with my friend Julie on the phone, who alternately asked me to pull over and tried to keep me calm when I insisted on driving.
When I arrived home, our dog excitedly came to my car and jumped in and on my lap. He is rarely outside and he never sits on my lap, so I took this as a sign that somehow, I would be supported.
People started calling me back, and I either didn’t answer or I talked their ear off. The social worker gave me some ideas, and the oncology nurse practitioner told me that he would contact my oncologist, who was in Australia.
I’m finally calming down. Still freaking out a bit, but at least I can speak clearly. My oncologist called me as soon as he landed at Logan and we discussed the option of switching doctors versus the timeline we set up. He promised to work on it over the weekend, which was above and beyond the call of duty. I feel like someone has my back. (Ha ha – especially since that is where the nephrostomy would go…)
I have so many parts outside my body that are supposed to be inside (and out of sight) that I’m starting to wonder if my body is turning itself inside out. I’m spending a lot of time appreciating my back, especially the fact that there is currently nothing hanging out of it. I wonder what life will be like. I’m noodling over the best way to explain this to the boys.
Thank you for helping to keep this all together. It really is unbelievable. But like everyone, we do what we need to do and continue moving forward. Deep breaths.
“You are the sky. Everything else – it’s just the weather.”
– Pema Chodron
Love and blessings,