It’s with pleasure (you know how I love a good rant!) I share the next #MetsMonday Featured Post — “Port Rant” — by Linda Catanzaro Boberg. Linda has contributed several other excellent pieces, and I’ve included the links to those at the end of this one.
Be sure to share a comment or ask Linda a question in the comments section at the end of this post. Thank you, Linda, for another candid piece.
by Linda Catanzaro Boberg
I would guess that most Cancer Havers who need chemotherapy have port catheters placed inside their chests. It’s supposed to make it easier to draw blood and feed chemo into our bodies. It’s also supposed to be safer for the nurses and patients. Chemo is serious stuff.
But I have had nothing but bad luck with my ports. Yes, there have been two.
First port, I didn’t even blink when the doctor said to have it done. “I’ll do whatever to get well.”
During the insertion, I was supposedly in twilight sleep, but I heard all the people in the room laughing. When I got to recovery, the nurse asked if I wanted cranberry juice and without thinking, I said yes.
I threw up all the way home.
And then, the damn thing did not work. No blood draws. It did work for putting chemo in my body, but nothing else. The nurses all had a theory about how to make the port work: Move your head right, take a deep breath, lean back, use an ice bag to get the thing to accept insertion. Nothing worked.
By the end of treatment in 2014, I told them not to use it. In 2015 when it could not be accessed before my craniotomy, a nurse declared that it was obviously broken and that they would not use it.
My oncologist, oblivious to how the thing didn’t work, suggested that we keep it in…just in case…like a talisman. When the breast surgeon discovered this, she about had a stroke, worried about clotting and scar tissue, and made me come in the next day to remove it.
So, from 2015 until mid-2022, I was port free.
Unfortunately, when you get metastatic cancer, the options for meds are too few. My first two options were pills. The first one failed after one month and the second one made it to three years. When that failed, I was given a chemo drug which was pill form — four two hundred milligram pills twice a day.
And it didn’t work.
The next option was IV chemo. I told the oncologist — my fourth since cancer was first detected — all about my last port. She let me decide, but when I heard how I’d probably be begging for a port, I decided to go with it.
My friends, never doubt your gut. My gut told me that this port wouldn’t work either.
I had the port placement on a Monday and came to the cancer center on Wednesday for what was supposed to be labs, then visit with the PA (Physician Assistant) to check the labs, and then chemo.
Minutes into the labs part of the appointment, I knew I was in trouble. No blood was coming out.
“Turn your head to the right.”
“Take a bunch of deep breaths.”
The lab tech called over a colleague, who quickly assured me that they would make it work.
At this point, I felt like I had traveled back to 2014-15 when every nurse I encountered in the California chemo infusion room announced that THEY could get this port to work!
“Let’s have you move over to this recliner,” one of them said.
As I did so, blouse fully open, I saw that the door to the lab room was also fully open. So, while I reclined there, everyone in the large waiting room could see me half dressed, my body inclined backward, my head almost hitting the floor.
“Got it!” the tech said.
When I asked how she did it, she said they had to suction it out, that the normal placement of blood draw tubes which normally suction out blood was not working. So, blood tests drawn, something taped to my shirt for the chemo room, blouse still open, I went to sit and wait for the doctor.
But my blood tests were so bad, I could not get chemo. All I could do was go have a chemo nurse disconnect the syringe from my shirt. I must’ve looked despondent because she was very nice, even buttoning the blouse that I had failed to remember was wide open.
I’m still angry about the whole thing.
Why did that door have to stay open? Why is that recliner situated so near the door? And why does every fucking nurse or tech think that they are experts at getting ports to work?
I am my biggest ally.
YOU are YOUR biggest ally.
I learned this after telling nurses and doctors how exhausted I was and that something was not right about my recovery after initial cancer treatment. If I had screamed more loudly back then, perhaps the meningioma (brain) tumor would have been discovered earlier, removed sooner, and given me another good year after breast cancer treatment.
I’ve since learned to speak loudly and not be intimidated by providers.
I have refused getting weighed, told off nurses who call me sweetie, or honey, or whatever platitude they use with gray-haired women, and fired a doctor for her lack of concern for how she spoke to me (as well as her office staff).
So, when I go in next Wednesday for the labs, doctor, chemo infusion, I will not allow them to use my port. I will tell them to take the blood out of the very sturdy vein in my left arm. That way, if the blood levels are still bad, I won’t have had to endure the open door, recliner, and the phlebotomists who think they know it all.
I know my body.
It’s traitorous in my fight with cancer, but I believe it is telling me that it won’t allow blood to be taken from a port. Now, if the labs are good, then I’ll ask the chemo infusion nurse to access the port, and we’ll hopefully be good to go.
So, I did as I said: I told the phlebotomist (another person today) that I wanted her to draw blood from my arm and told her why. No problem.
My blood tests showed improvement in white blood cells, but my hemoglobin is still lower than they’d like. Still, they signed away on chemo.
Off to the infusion center!
The nurse in the infusion center, listened to my concerns for the port, inserted it and had almost the same problems as last week (but at least it was more private). She called the Head Nurse over who tried and could not draw blood. That woman said that they do have problems with ports, and that some people have anatomical problems concerning tissue inflammation pushing against the tube the leads the fluid out.
They were also worried that the port might be leaking; you don’t want chemo going in anywhere other than a vein. I asked them to insert a normal line to do the chemo today.
There was no argument on their part.
So the next day, I was to get an evaluation of my port. It sounded like a simple test — injecting dye into the port and seeing what’s going on. If the port is bad, or my body can’t handle it, I’m getting it removed, and we will just have to figure out how to give me chemo and take blood. The vein in the crook of my arm always works, but I know there is concern about ruining your veins during chemo — which is why they have ports!
By the way, I sent a letter to the Cancer Center, explaining my horrible day (Part One) in detail.
Certain that I was just not going to have a working port, I entered a treatment room, disrobed as much as they wanted, and settled back for their assessment.
The same PA who inserted the port did the evaluation. The MINUTE she put the needle into the port she accessed blood and was able to insert the dye. No problem. She determined that the others who had tried to access it were incompetent. There was even ‘something’ in the pocket of the port which could have been dangerous if it entered my body. (She thought it would be okay.) So, since I was to have another blood transfusion in less than twenty-four hours, she hooked me up to that apparatus and sent me on my way.
My only concern was that I might encounter others who cannot access my port. I asked if I could have them call her and if she’d come teach them. She said, “Absolutely.”
I have her on speed-dial.
Elated, I walked out to my husband. Happiness can make all the difference in a day of the life of we cancer havers. My low energy seemed to increase with that happiness. An hour later my PA called to tell me that my labs showed that my cancer tumor markers had significantly decreased. The Taxol is working. This added to my happiness. (I had had a bad reaction to chemo the previous day and she was calling to see how I was following that awful session. But that’s for another rant.) Now if only the damn port can be accessed!
Another Wednesday, another visit to the cancer center. I got the same phlebotomist who had me doing calisthenics during the first visit. I told her that the PA who inserted the port had checked it and declared that it was good. So, this woman goes to get a young man who is the god of port insertions (I guess). He admits that my port placement is “positional”, but has me turn my head and raise my arm. He gets into it.
Yay! Can I request you?
After he says yes, I go see the PA who tells me that they are changing my chemo and have to wait a week for the damn blood numbers to rise. (Another rant!)
BUT she tells me that she and the doc are aware of the letter I sent and that their management staff is looking into things. They also ask me the name of the first phlebotomist.
Yay! This center wants things to work for patients.
The next day, I got a call from an administrator who apologized, saw that I had an upcoming infusion, and asked the Head Nurse to do my port.
Yay, Yay! Someone is listening to my rants.
The moral of this rant is that you should NOT be afraid to complain about something that is bothering you concerning your treatment, personnel, or doctors.
Don’t let them upset you.
As I wrote in my letter to the center, “Sometimes, all we have as cancer patients is our dignity.”
Hang onto it with everything you’ve got.
You might want to read, How to maintain your dignity when you’re a cancer patient.
Bio: In 2013, Linda was diagnosed with Stage 3 Pleomorphic Lobular Carcinoma, ER+, PR+. She still doesn’t completely understand what the hell that means, but she feels like she’s earning an unwanted Ph.D. in cancer. She’s gone bald three times, once for cancer and once for brain surgery, and again for Stage 4 Metastatic Breast Cancer. Wife of 44 years, mother of three, grandmother of two, and the sister of six women – NONE of which have cancer.
Linda writes under the pen name Adelyn Zara. Her first series are Tales of Resilience, about people who persevere under pressures including cancer, mental illness, and poor choices. Just recently, she began another series called Loving Lakeside, about retirees. The first in the series – Second House, Second Wife – released last month and is available at Amazon. Gardening, working against mental illness stigma, staying aware of cancer issues and writing are keeping this retired, former college student advisor busy. You can reach Linda at email@example.com.
If applicable, have you had issues with your port or opted out of having one?
Cancer or no cancer, do you speak up when there are issues with your treatment, personnel or doctors?
Do you have a comment or question for Linda?