Thursday, March 22, 2007

The Port Authority Gets Giddy

I love this piece that the blogging surgeon Orac wrote about removing a cancer patient's port. Especially his observations about post-chemo hair:

"As I spoke to her before the operation to get informed consent, the patient ran her fingers across her short hair, only now starting to grow back after her having completed her chemotherapy a few weeks ago. As I've found with many women whose hair is just starting to reappear, like the soft coat of a short-haired puppy, she looked good--better than I remembered her with hair. Indeed, it never ceases to amaze me how many women can look so good at this point in their course, where they have what looks like a Marine-style buzzcut. Maybe it's just me, or maybe it's because women who reach this stage almost invariably seem so full of life; they've faced down death and their worst fears, and come out intact, if not unscathed. And this time, the patient was elated at having this procedure. Indeed, she was practically giddy, happier than I had ever seen her. She had a glow that, if I believed in Reiki, might have interpreted as a her life energy becoming visible."

The giddy post-chemo glow

And I also love what he says about ports. This is so true:

"It's easy for a surgeon to forget that the insertion and removal of a port represent two major milestones in the course of a patient's cancer treatment. The insertion of a port often represents, even more than the scars from surgery, a daily reminder of the patient's disease, and the insertion of that port represents a long-term alteration of the body necessitated by her disease. It's a constant reminder that life is not normal, a cold, metallic foreign body implanted in her body. Every time a woman feels that quarter-sized metal port under the skin, it's telling her that her life is not what it was; she is not the same as she was; she is not "normal." Even though the implanted port may not even be noticeable even if she wears a wide-necked shirt, other than the small scar left from its implantation, the patient knows its there. Sometimes this provokes complaints that one wouldn't have expected. I've had patients complain that they felt the port while trying to golf, to ride a bike, or even do yoga, and it bothered them. I've had patients who normally sleep on their stomachs complain that they can't do so anymore because they end up lying on the port."

Let me officially go on the record as saying I hate my hideous port.

My hideous port

So I went down to the hospital Tuesday to have the hideous thing flushed with saline. I'm supposed to have this procedure every 4 weeks to prevent clotting. While I was there, I stopped by 5 North to say hello to the chemo nurses. The conversation went something like this:

Me: Hey, Mike! I have a port question. Are you a port authority? [nyuk nyuk nyuk]

Mike: [totally oblivious to my hilarity] It depends. What's the question?

Me: Is it safe to do heavy lifting with a port?

Mike: How heavy?

Me: Heavy enough to win trophies, to break records, to get my picture on the front page of the paper.

Mike: Oh you mean lifting weights, like at the gym? Well, it's probably ok if you're just trying to get toned.

Me: "Toned"?[1/2 inch long hair bursts into flames] Gaaaah!!! No! No! Anything but "toned"!

Mike: Ok, it's probably not good to do really heavy lifting, like competitive power lifting heavy.

Me: Yeah, that's what I'm talking about, competitive power lifting heavy. I want to get back my 145 pound bench press. But it kind of hurts when I try to go more than about 60 pounds right now.

Mike: Oh no. You should have the port taken out.

Me: Now? I was supposed to leave it in for two years, for Rituxan maintenance. Can I just have that straight into a vein?

Mike: Absolutely!

So can you believe it? I'm going to have my port removed! I'm going to be able to wear spaghetti straps this summer! No more huge freaky looking doorbell poking out of my chest wall!

Well, that's assuming I can actually get through to the surgery department at Our Lady of the Damned. Which is about as easy as getting through to the White House. They have a pretty rigid "don't call us, we'll call you" policy, so it's impossible to get through on the phone. I'm going to drive down today and try to make an appointment in person. If that doesn't work, I'll have no option except to go the emergency room and wait 12 hours to see a newborn resident who has no idea what on earth I'm talking about, but who may, after several hours of me shrieking, sobbing, and chaining myself to his lab coat while setting my eyebrows on fire, be persuaded to put in for an appointment.

As Orac says:

"Indeed, removing a port is so easy that it's equally easy to forget what this means to the patient. It means an end to the chemotherapy. It means that the most intense, painful stage of treatment is over. It means reversal of at least one bodily alteration. It promises the hope of a return of what was taken away by the cancer. To us surgeons, it's a simple procedure, even a nuisance sometimes when things are busy and we're being asked to do a dozen procedures and being pulled in a million different directions....but whatever happens, whatever the future holds in store for her, removal of her port was still an important milestone. It gave her her life back."

Wish me luck!


Blogger momo said...

Woah! You can get it out! Good for you for asking questions, showing up in person, setting your eyebrows on fire, doing what it takes to make sure you get what you need. I just have to say that I am so happy to read the happiness in your posts these days.

3:00 PM  
Blogger Christ's Treasure said...

Good God! I am so happy for you, let us know when you are benching 160 again!!
Stay Strong,

3:40 PM  
Anonymous Anonymous said...

Oh, of course good luck! And congratulations; that's awesome.

I look forward to photographs of the empty space. :)

3:54 PM  
Blogger ms. jared said...

that's awesome! congratulations and buena suerte!

5:43 PM  
Blogger jana said...

Good luck! I was one of the first ppl to have a port--way back in the mid-80s. My shoulder still aches in a weird way from where it was and it feels more stiff than my other shoulder.

7:14 PM  
Blogger Nixie Bunny said...


Hi. You don't know me, but I've enjoyed reading your blog since I stumbled across it in the beginning. I have to say, you are quite a writer and you have the sense of humor and zest for life that makes cancer bearable.

I have a son who developed leukemia when he was two years old. He received a Broviac port, the type with a white rubber tube that sticks out the chest wall. It lasted 9 months before the site becme infected, which resulted in removal bright and early the next morning. (Of course, the insurance company dinged us for lack of 48-hour notice.)

So if the hospital won't make an appointment, you might be able to make it red and swollen for the 12-year-old intern to look at and shake his head disapprovingly.

Good luck!

8:23 PM  
Blogger johnieb said...

Blessings on you and on the port removal. Would the Residents of Our Lady of the Indigent Hospital for the Wayward be more impressed if several of us set our eyebrows on fire at the ER, complete with Zydeco dancing and acrobatics?

11:36 AM  
Blogger Alto2 said...

A small correction. At this point in the medical academic year, residents -- yea, even interns -- have several months' experience under their belts. You're relatively safe in dealing with them. However, don't ever, ever go to a teaching hospital in July or August b/c all the students are brand new. Interns and residents start their academic years on July 1.

More importantly, Yahoo! on getting that port removed. I hope you get an appointment quickly.

12:57 PM  
Blogger modmom said...

nice to meet you + your blog!
great pictures!
my hair is coming back in curly for the 1st time in my life.

2:30 PM  
Blogger Trasi said...

Agh, totally wouldn't make it red and infected looking - that thing goes straight into your superior vena cava! YOWCH!
My mom had a port put in a few years - yes YEARS - ago, in order to get infusions of biologic drugs to combat her advanced case of rheumatoid arthritis. She has to go in and be infused monthly, and her arm veins/hand veins/any other vein they can find are all shot from the various drugs she's been on for years, plus all the sticks and pokes throughout the years. So she has to have that port. And won't ever be able to have the thing removed. I am sure it is much different for the cancer patient who has milestones associated with insertion and removal of it, but for her it's a lifelong reminder and to a certain extent, saves her from feeling like a pin cushion all the time. But it doesn't stop her from wearing spaghetti straps when she wants to!

10:24 AM  
Blogger Lynne said...

I have a very different reason for being grateful you made this post - I'm about to have a port put in, and your photo is the first illustration of what it may look like once it's in that I've seen anywhere. (Oh the details no one thinks to mention!) I have "bosoms" as we say in our house, so I don't really do spaghetti straps anyway, and my chemo has been really uncomfortable, so I'm relieved to have the infusions go faster and be less painful.

You have such a great perspective about all of the challenges of this disease and its side effects, and I love your sense of humor. Keep on blogging, and keep showing us that gorgeous hair. Annie Lenox by noon this Wednesday, I'm sure!

And, congratulations to you on the milestone of having the port removed. I'm really happy for you.

4:52 PM  
Blogger Lizard Eater said...

Our baby daughter had kidney cancer last year, and had a port for those luscious chemicals. I hated that port ... we were always having to get a TPN to dissolve something in it. Who knew you could get so happy to see a blood return!

Anyway, right after she finished treatment, we took her in for scans and the port blew a hole. We told the doctor, "we're going out of town -- does she need to have it removed first?" Said he, "Oh, as long as you're not going camping out in the middle of nowhere." (Nervous glance between The Husband and myself.) "Um, actually, we're going camping out in the middle of nowhere." We got it out. Every couple of hours, we would go lift up her shirt to see that the bump was gone. It felt great. For us, anyway. She was more interested in eating crayons.

4:36 PM  
Blogger Lymphopo said...

"The port blew a hole"!??!!? Aiiiyiiii!!! I honestly don't know how people retain their sanity sometimes. Big hugs to LW.

5:14 PM  

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