Letters From Cancerland: Port Of Call
The word “port” has multiple definitions, ranging from a rich, fortified wine, to the left side of a ship, to a town or city where ships load and unload cargo. Cleveland, Ohio, has a port. So does Portland, Oregon, despite being 90 miles inland. During a storm, ships seek a port – preferably a safe one – and are willing to settle for the proverbial “any port” in which to ride out the bad weather.
“Port” can also mean an access to a system. In my case, my (relatively) new port provides access to my cardiovascular system.
In mid-December, I finally bowed to the inevitable and had a port put in. My veins had hit the wall. Since September, they had been subjected to the Kyprolis (carfilzomib) regimen of two consecutive days of infusion for three consecutive weeks each month. Then there were the various draws for major labs as well as the weekly draws to check the effects of the treatment on my blood counts.
As the fall and Kyprolis treatment progressed, my veins grew increasingly fragile. They were scarred from repeated sticks. Bruising was the norm and venous blowouts became common. Two tries to get an IV line started to become the routine, and on bad days it took three.
That was when I threw in the towel and scheduled the necessary surgery.
Surgery was swift. I warned the surgeon beforehand that I bruised extensively, and he reassured me that everyone bruised some. Afterwards, he came back around and said, somewhat abashed, “you weren’t kidding about the bruising.” The bruises were indeed spectacular, rivaling the finest makeup artistry of Hollywood.
Four days later, I had my first infusion through the port. I haven’t looked back.
I am of two minds about the port.
On the one hand, I feel it is a retreat, one that couldn’t be stopped, but a retreat nonetheless. That small lump under my skin is a visible reminder of the constant grind of treatment and myeloma on my body. Doctor/author Atul Gawande’s trenchant observation about incurable, terminal cancer comes to mind: even when one is doing well, the night brigade is always out there bringing down the perimeter defenses.
On the other hand, the port is a godsend. Yes, there’s a stick to access it, but it is swift and sure and not followed up by an apology for a blown vein. And my hands are free to read and write, which is how I pass my hours in chemo.
A quick trip to Goodwill to procure a few men’s button-down shirts (for easy access to the port) and I am both casual and comfortable with only a small tube looping up to the saline, dexamethasone (Decadron), or Kyprolis. And, in a tight spot, I can always throw on a tie and go to court (that’s a joke, you all; but I do know how to tie a tie properly).
Indeed, life got infinitely easier when I capitulated to having a port put in.
A port is an access; a related word, “portal,” is a door or entrance. Doors have always held a special fascination for me as mystical openings between “here” and “there.” And maybe my port is the gateway between here and there, whatever "there" may be.
Dorothy opened the farmhouse door and stepped into Oz. I am hoping for no less in Cancerland.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I've thought about a port as well. If I were getting Kyprolis twice a week plus blood tests, I'd definitely opt for one. Right now I'm on the Velcade shots, but there are still, as you say, a lot of blood draws.
I think you made a wise decision.
My daughter-in-law called her port her bee sting. She actually kept it a year beyond her chemo for colon cancer, just so she wouldn't have to have it redone, if she ever needed any more chemo. Thank God she did not and has been cancer free for five years. I long for the day when we myeloma patients can be cured!
Pray for the cure,
Julia
April - Thank you so much for sharing your (positive) experience. I was so terrified of having a port (temporarily) installed for the stem cell transplant, I had almost decided not to have the procedure. Happily, I was able to control my fear enough to have the procedure and have been in remission for two years. When I need port for treatment like yours, I will remember your words of encouragement and hopefully be calmed.
Hi, April!
I hope the port continues to work for you. Your graceful writing (and with such good humor) communicates so much that is helpful to me and others, I'm sure.
It was my very first chemo infusion – after it took 6 attempts to canulate, a few Valium to try calm me, and a mental anxiety attack from needle phobia – that they put me in the following day to have a "port" installed. Best thing ever in my opinion.
Admittedly it is tender for a few weeks, but at least I know it usually hits blood first attempt, so more then worth it. I still hate needles, but at least I don't get anxious anymore.
At the moment I am only on Zometa infusions quarterly, so every 4 weeks I have it flushed. I was given the option to have it removed and declined. I am not letting it go until it has to be replaced. I am told it has a life of up to 10 years.
April, my port was my best friend for six and a half years – worked perfectly and never had an infection. A few months ago I had to have it removed when the tired port just stopped working. The wonderful nurses in Infusion Therapy at M.D. Anderson tried to work their usual magic; however, my best friend was just done. If and when I need to return to infusions, I'll have another port put in and be thankful for it every day. Best wishes to you.
April, this month's offering makes me smile as it reminds me of this time last year when we were anticipating my husband's Hickman central line being put in previous to his ASCT. It soon became a welcomed friend. Although a bit cumbersome with the tubes hanging, a good roll of tape took care of that.
I smile because I remember when we were in the isolation room post transplant, every time the door would swing open, Bill would start to unbutton his pj top expecting bloods to be drawn. One of our favourite nurses would look at me and wink. Following the wink, she would give an exasperated "There he is, trying to show off his chest again."
Day 100 was met with feeling the loss of a friend with the removal of the Hickman. If and when the day comes to have a port for future meds, it will be met with less concern than originally.
Thank you for another great article and for putting your witty, positive, and insightful spin on yet another multiple myeloma challenge.
I've had a double port since 2007 and can't imagine what life would have been without it. I got it within a few months of being diagnosed. My arms would be toast now had I not made this decision. As it is, the port scarring is not too bad after 8 years, and the double port is always a point of discussion (and sometimes amazement) from the nursing staff. Love, love, love the port!
Dear April,
Thanks for sharing this latest news about getting a 'port' (portacath), which is a form of catheter. I haven't had one, but did have the 'venous central line' for a few months over the stem cell transplant time. When I had my induction chemo with Velcade, the veins on the back of my hands started to collapse (this was infused Velcade; subQ velcade not being used yet). A few months later, when I no longer was getting the infusions, the veins had recovered to quite an extent and so am glad I did not have chemotherapy applied directly anymore.
Getting the blood draws is another matter, since I have had so many of them by now, and it is difficult for the lab techs to find a vein to draw from sometimes!
Best wishes, and I hope that the treatments you are on prove to be really effective. You are a real trooper!
Thank you, April, for a valuable column. While my husband is not at the point where he needs a port, at least I know that it might become inevitable. Reading of your experience puts my mind at ease and I hope I will help him know when it is time put in a port.
Excellent article. I think, judging by the comments, that you have helped many others come to terms with some scary aspects of myeloma treatment. Thank you.
I have been enjoying reading these comments – they seem split between "Have a port and love it" and "Don't have a port, but it may happen in the future." Nadine's comment about the Hickman catheter made me smile. I had a Hickman for several months in 2005 when I underwent tandem stem cell transplants. I saw my oncologist this past Tuesday, and he asked me how the port was working. He then said, "Remind me. Did you have a port for your transplants?" When I told him I had a Hickman, he waved his hand in the air and said, "A port is nothing then! Ought to be easy after a Hickman."
After two years of IV's, I finally got a port in October. My veins were toast. Why did I wait so long? Firstly, I was still in denial (yes after two years) that I was really sick. Every month thought that would be the last. Secondly, no one really explained it to me. I had no idea what it was and how beneficial it would be. You can't see it with my clothing. I still can't touch it without getting queezy though. Best thing ever.
I have to ask why you need to go get men's clothing. I have no problem with women's tanks, t-shirts, button-down shirts, etc. Even gym clothing. They just tape into position. When feeling bad, it's important to still feel good. Get back into women's clothing.
Once again, April, I love your writing and this time your description of a port.
I had a port for 2 years and I think I had it pulled too early. I relapsed and am now on Krypolis, and I am second guessing my decision. My veins are getting tired and I'm seeing the myeloma expert to see what's next with my relapsed multiple myeloma. I also had a Hickman for a while too.
I used camisoles a lot and have quite a collection of colors and materials. Good luck with the dressing part and keep writing.
Love your article about the port. I was prepared mentally, and prepped surgically, to receive a port prior to having my stem cell collection. However, to my surprise, the surgery was unsuccessful. The surgeon said due to my anatomy, they couldn't get it in my chest area. I had to get an intravenous line placed in my groin area to reach my major vein. Once admitted to the hospital for my stem cell transplant (SCT), I was given a PICC line. This was alright, but it had to be changed biweekly. Prior to this Velcade Shots. I felt like a pin cushion. I had my SCT in October 2015.
Well stated April. I had a port put in two years ago and have not regretted the move. It's well worth the mild discomfort I experienced putting the port in. My only reluctance was the concept of cancer taking another little piece of me. But its well worth it in the long run.
The two comments about my sartorial choices cracked me up. Even without the port, I prefer men's shirts over women's blouses hands down. And given that I am usually coming from work (I am on staff at a court), the shirts work better than almost anything. Trust me, tank tops are not allowed under our dress code (and it is 0 degrees out right now, which makes the thought of a tank top downright uncomfortable!
Yvonne raised an issue I have not heard before: not being able to accept a port for anatomical reasons. It sounds like there was a workaround so that she could get her SCT after all.
And my good friend Doug Missman weighed in on his port! (Doug too lives in Cancerland, but not in the myeloma subdivision.) He and I had discussed ports a few months before I bit the bullet and had mine installed, and it was Doug's take on his experience with one that helped me reach my decision. Like Doug, I struggle with the feeling of cancer "taking another little piece of me."
April, here's to you, your chemo, and your port: may their access to it be easy, and your destination to "there" be long-term remission. Thanks for the great column!
Hello April, love your columns. I think you made the right decision with the port. I live in Canada, so before my transplant I had an apheresis catheter inserted in my chest; it is the same as the Hickman.
All the best with your appointment this week.
Hello April, I had to reread your column again this week. I had a port reinserted February 9 and will write about it this weekend.
But your article helped me make the decision. So please keep writing.
maureen, your fan
Get new Myeloma Beacon articles by email.