Information on Ports

Just as I was preparing to have a port (or port-a-cath) inserted on April 2, one of the other cancer bloggers I read regularly wrote about having her port removed. She even has a photo of what hers looks like, and commentary by a surgeon about the process of inserting and removing ports. If you feel completely in the dark about the whole procedure (as I was), her post is worth reading. That appointment was canceled as we revisited my whole treatment plan, and now I am scheduled to have the port inserted this Friday, April 20. And the best part of the new appointment is that my favorite surgeon, Dr. M, will be doing the insertion.

As I mentioned, my fellow blogger spends some of her post quoting from "Orac" a blogging surgeon/scientist, who writes about ports, and I'm going to borrow from her approach and include some of his information as well.

Orac begins, "In cancer, the goal is different [than in dialysis]. It's shorter term, and the tools used are less permanent. The goal is to give the patient durable vascular access that allows chemotherapy to be given, usually over a few months. Some chemotherapeutic agents are very harsh on the veins, and because of that it's highly useful to place a catheter in a large central vein with high flow. . . . "

Then he describes the port itself: "Finally, there are totally implanted ports (like the Port-a-Cath), where the entire assembly is implanted under the skin, and the port is accessed through a resealable diaphragm using a special needle inserted through the skin. These can be left in place for months or even years and tend to be the first choice for chemotherapy. Unless a patient is thin enough that it's possible to see the outline of the metal part of the port sticking up under the skin, they're basically invisible."

Here's his description of why a patient would want the port inserted: "If you're a cancer patient who needs a prolonged course of chemotherapy, your port is your friend. Your blood can be drawn through it (and you will need frequent blood draws). You can get your chemotherapy through it without painful needlesticks and burning out of veins. As I said before, injecting chemotherapy in to peripheral veins can be quite painful for some drugs, and a port will eliminate that problem. These two things alone can go a long way in improving a cancer patient's quality of life. It is true that ports aren't without their complications. They can become infected and require urgent removal. They can clot, necessitating treatment with clot busting drugs. Sometimes they can cause a clot in the large blood vessel in which they are placed, leading to arm swelling and even facial edema, not to mention urgent removal of the port. There can be rare misadventures where the port catheter breaks and goes flowing off in the bloodstream, requiring angiography to fish it out. However, on the whole, ports do far more good than harm, and, before radiologists started doing these procedures (which they are doing more and more) general surgeons were the ones who put most of them in."

And finally, speaking as a surgeon, he comments that "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."

Before I read Orac's post, I didn't know that radiologists were sometimes inserting ports, so when they called me to schedule this new appointment, I said I wanted a surgeon, and I wanted Dr. M. (The chemo nurse, with 25 years of experience, had mentioned that he puts in "superb" ports!) It will be good to have a familiar face before the procedure, and to update him on my state overall. This procedure is done under "conscious awake" sedation, not general anesthesia.

The plan for Friday is to have blood drawn and tested first thing at 10:00 a.m., and to hope that all of my blood numbers are high enough for chemo and then the port insertion. I'm scheduled to have just the Gemzar infused (not the cisplatin), and then, my appointment for the port is at 12:30. The kids are on school vacation this week, and my good friend Sandy is going to accompany me to the appointments while Patty keeps track of the kids.

Today I was going to go into Boston to teach, but just couldn't muster the energy, so my classes are being covered again. Next week is the last week of classes, so things are wrapping up, and I have lots of papers to grade still. I'm glad the semester is ending, as being a full-time faculty member and a full-time cancer patient has been very challenging over these months.

What, Me Worry?

What does a person with cancer worry about? Everything! Or, at least it seems that way. I started to call this entry "What do people with cancer worry about?" but I realized I can't speak for everyone. Well, I do know some of the things others with cancer worry about, because I read them online. Reading Leroy's blog, and comments there, reading the discussion boards of others with gallbladder or bile duct cancer (cholangiocarcinoma), I see that lots of folks are worried about their treatment not being effective, or, if in remission, that their cancer will come back. Many of us with cancer, and our friends and family members, are worrying about suffering, and about dying before our time. Those of us not currently having symptoms of our cancer worry about the symptoms returning. We worry about needing treatment.

I am definitely in that group, worrying and then trying not to worry about twinges in my abdomen, a small ache here, soreness there. Last week, I had indigestion for a few days, and it brought me back to the week before I was hospitalized last May. (I want to say now that I think, logically, that my indigestion was caused because I kept forgetting to take the Protonix prescribed by my doctors, the only drug I'm still on post surgery. Protonix is a "proton pump inhibitor" drug that inhibits the production of stomach acid, and keeps indigestion down.)

So, my indigestion story: Last May I was called to jury duty, and finally sat on a jury. At lunch on Monday, they set us loose, and I went down the street and, for lunch, bought a turkey sub which happened to come with tasty raw onions. Later, I had indigestion. Foolishly, on Tuesday I bought the same lunch, forgetting about the indigestion. Two days later, my urine changed color, and three days after that, my skin began to itch. So, my "story" about my blocked bile duct is that the final straw was caused by those raw onions! Obviously, the cancer had been growing for a while, and I don't "blame" those onions for my blocked bile duct, but the association is there for me. Once my bile duct was blocked, nothing tasted or sat quite right, and I had a rough week before going to the doctor's office. Having indigestion for two days last week reminded me of those days and brought up my fear about a repeat of the days before my hospitalization and then my surgery.

I worry about the future. I worry about teaching next fall, about staying well long enough to continue with my life, to see Lucy move into junior high school, and then high school, to see Nathaniel compete in gymnastics for many more years, to grow out the two front teeth he's lost, and develop into a young man.

I worry about getting a bad CT scan and then needing chemo. Then, I worry about the effects of the chemo, and I try not to worry, because I don't want to anticipate how my body will react. I worry about worrying, and then I try not to worry. Some days since my last clean scan, I have thought only occasionally about cancer, about having cancer, and some days I can't seem to think about anything else.

After I wrote the first part of this, I had a conversation with Patty about this Sunday's sermon. (Patty is a minister, so most weeks, she has a sermon to write for Sunday service.) Our conversation reminded me of the Serenity Prayer, one so central to Alcoholics Anonymous, and one which speaks to so many of us. I think it's what I need to remember when I worry.

God,
Grant me the Serenity to accept the things I cannot change;
The Courage to change the things I can; and
The Wisdom to know the difference.

I can't change what's happened in my body, but I can change how I feel about it. And when I worry, I can recognize that what I worry about is out of my control, and release it. I also want to remind myself that my goal since my diagnosis has been to live in the moment. When I worry, I project into the future and let go of the present moment. Serenity. Leting go of worry about the future. Being in the moment.