portSo I’ve had my port-o-cath for a little over a year now. It’s literally a part of me. This little medical devise was implanted under my skin last spring to enable my medical team to obtain easier access to my veins for purposes of administering chemotherapy. The catheter connects the port to a large vein in my neck. And under the skin, the port has a bubble through which drugs can be injected and blood samples can be drawn with less discomfort than repeated needle sticks. That’s the purpose of getting a port; and by and large, this was true in my case. The port saved me (and my poor infusion nurses) a lot of angst. But oh how I fought getting it.

After I was diagnosed with Fallopian tube cancer, my oncologist told me she’d need to open me up to see what was what before she could stage my cancer and determine how far it had spread. She told me that she’d try to remove as much of the cancer as possible, and that what she wasn’t able to excise, we’d treat with chemotherapy. She said that if the cancer wasn’t too widespread, we’d treat it with IV chemo through my veins. However, if it seemed to have spread further than we hoped, she’d likely install an intraperitoneal (IP) port onto my ribcage. Then she could shoot chemo drugs directly into my abdominal cavity. It was a more aggressive form of treatment, which some patients weren’t able to tolerate, but had apparently been proven to be highly effective.

So I knew going into surgery that if I woke up with an IP port attached to my ribcage, my doc had found the cancer to be widespread.

Well, I woke up with an IP port attached to my ribcage.

They asked if I also wanted a port-o-cath installed, for administration of the IV chemo. The alternative was just to shoot the drugs directly into my arm through a standard IV. Let’s do that, I said. I didn’t want another procedure to install a second port. And mainly, I didn’t want another visible reminder of my cancer. I had just been cut from stem to stern and hadn’t yet adjusted to my new scars. Hell, I still had a jagged row of staples traveling down my torso and around my belly button. And my c-section incision hadn’t even fully healed. I was feeling unattractive and out of control. This (very small) decision about the port was something I could control. I don’t want it. I’ll be fine.

Every time I had chemo, whether in the abdomen or in the arm, I had lots of other drugs injected into my body via IV drip. Anti-nausea drugs, drugs to prevent allergic reaction, etc. So I was forever getting stuck. Within a few weeks, it became more and more difficult for them to find good veins. Then we’d find a good vein, start the drip, and the vein would blow, so we’d have to start the process all over again. Periodically a chemo nurse would tentatively ask if I’d considered getting a port. No, I said. I don’t need one. I’m fine. I’ve got this.

I gritted my teeth and suffered through week after week of attempted needle sticks and blown veins. Not only was it stressful and uncomfortable for me, I started to feel bad for the nurses. They would now come to me in teams, bringing their “best” IV stick person. I could tell they were as stressed as I was, maybe more. And it wasn’t just an annoyance; it was potentially dangerous. Each time a vein filled with chemotherapy drugs blew out, there was the risk of highly toxic chemicals getting into the surrounding tissue, with the potential for necrosis. Plus it hurt when it happened. I knew the situation was getting a bit ridiculous, all because of my vanity.

Then there was the day I blew veins a record five times. Tears were rolling down my face, as well as the face of my sweet friend who had come by for a visit. And sweat was rolling down the face of the nurse who was attempting the IV a fifth time. Okay. Uncle. Enough was enough. Go ahead and schedule me for a port installation, I said. It felt as thought the entire infusion staff gave a collective sigh of relief. I’m sure they were thinking, “well it’s about fucking time”. And it was.

port_chemotherapy[2]_tcm8-79336So, about mid-way through what turned out to be 24 rounds of chemotherapy, I had my port installed. The procedure was more painful than I anticipated (you’re awake for the whole thing), and the port stuck out more than I had imagined. It was ugly and creepy. I felt like some sort of a cyborg. I could hide my incision scars with a sexy little camisole, but it was hard to hide this strange protrusion right under my collarbone. As one of my fellow chemo friends told me, “you never know how slutty your tops are until you get a port installed”. I hated it.

I’ve since commiserated with other cancer chicks about how much we hate our ports. One friend told me she so couldn’t stand to touch hers that she’d apply body lotion to “that” area using a thick wad of fabric. I got it. I went to great lengths – and still do – to avoid touching it. I told a friend that it felt like there was a metal hockey puck under my skin. She said, “that’s because there is a metal hockey puck under your skin”.

Okay, so it’s gross. Now let me tell you why I’ve grown to love it.

At some point about three-quarters through my treatment, I had some scans and it appeared that I still had cancer. This prompted a difficult discussion with my oncologist, who explained that if I still had cancer at the end of this very aggressive regimen of treatment, more chemo wouldn’t help. This would mean that I had platinum-resistant cancer. If the best drugs they had to offer didn’t kill it, more of the same wouldn’t help. I’d be in big trouble.

I’m now almost a year out of treatment. I may or may not be having a recurrence of cancer. We’re watching some spots and hoping they either disappear or stay the same size. But the good news now is that if it turns out that I am having a recurrence, I could have more chemotherapy. My cancer might be platinum-sensitive at this point, but not resistant, because I went through a period of time where there was no evidence of disease. They could now try different chemo drugs on me. For that reason, my oncologist said she thought we should leave my port in place. This was music to my ears.

Talk about a change in perspective.

For me, now, the port means hope. As long as my oncologist believes my cancer is still treatable, I have hope.

I’ll take it.

14 Thoughts on “Any port in a storm (or why I love my port).

  1. laura karpman on April 17, 2013 at 11:31 am said:

    Hi Joanna, you are such a good role model. I have been going through cancer treatment for a year. I just had surgery 3 weeks ago to remove the cancer and found out I need 3 more months of chemo (I can’t have any more radiation!). I would love to get my port out but realize it will be with me for a while (and it looks exactly like yours 🙂 ). I found out that the new chemo I will be getting will most likely make me lose my hair. My previous chemos thinned my hair but didn’t take it completely away, so I am wrapping my mind around that and realize it is better than the alternative. I would love to communicate with you just to give each other support.

    All the best!

  2. sharon Newman on April 20, 2013 at 11:13 pm said:

    Joanna, you are the strongest person I know! Attitude is everything and you
    Are definately showing cancer who is boss! You are sn inspiration to so
    Many people. Thank you for sharing your story with the world!

  3. sharon Newman on April 20, 2013 at 11:15 pm said:

    Joanna, you are the strongest person I know! Attitude is everything and you
    Are definately showing cancer who is boss! You are sn inspiration to so
    Many people. Thank you for sharing your story with the world!

  4. Wendy on May 18, 2013 at 6:51 pm said:

    Love reading your blog!

  5. Your story is inspirational. Its fantastic to see that you have so much hope after having so much treatment.
    We wish you all the best in your recovery.

  6. Well hello Joanna! It’s one of those sleepless night, where I spend hours brooding about my cancer. I was diagnosed with melanoma in 2000. It was “in situ” – self contained and my treatment was simple. CUT IT OUT. In January 2012 I was diagnosed with DCIS in my right breast and LCIS in my left breast. It was high grade DCIS and multifocal. My treatment was simple…CUT IT OUT. After a Double Mastectomy and 6 more surgeries to rebuild my noobs (3 due to doctor error, 1 to faulty tissue expander) I was finally done. Went for my regular 6 month skin cancer check and ended up with 5 biopsy’s. All were cancer, all were caught early. My treatment was simple…CUT THEM OUT. In May, I went for a routine colonoscopy and was told I have advanced rectal cancer. This time my treatment is NOT simple. This time my cancer does not challenge my body image, it challenges my body function. I am about to undergo 5 1/2 weeks of constant chemo plus radiation – 5 days a week. I need the port. I am fighting this port. You’re awake when they put it in? really? that sounds rough. regardless…thanks for pointing out the positive. My oncologist tried to explain this to me but I wouldn’t listen. It sounds so much better coming from someone who has one. The side effects of the radiation have me so concerned that in comparison, chemo sounds doable. After the chemo and radiation, I get surgery where they’ll remove my rectum (or “wrecked-tail” as I call it)and part of my colon and they give me a bag. (Not a Tory Burch bag, mind you although I’m thinking of contacting her to ask for some stickers.) If you haven’t figured it out by now, I’m feeling pretty sorry for myself. But thats because its dark, and sleep will not come. perhaps now I’ll sleep, now that I don’t have to worry about “the port”… so glad you’re out here. we cancer bloggers are warriors indeed. Shannon @ greenmonkeytales.blogspot.com

  7. Well hello Joanna! It’s one of those sleepless night, where I spend hours brooding about my cancer. I was diagnosed with melanoma in 2000. It was “in situ” – self contained and my treatment was simple. CUT IT OUT. In January 2012 I was diagnosed with DCIS in my right breast and LCIS in my left breast. It was high grade DCIS and multifocal. My treatment was simple…CUT IT OUT. After a Double Mastectomy and 6 more surgeries to rebuild my noobs (3 due to doctor error, 1 to faulty tissue expander) I was finally done. Went for my regular 6 month skin cancer check and ended up with 5 biopsy’s. All were cancer, all were caught early. My treatment was simple…CUT THEM OUT. In May, I went for a routine colonoscopy and was told I have advanced rectal cancer. This time my treatment is NOT simple. This time my cancer does not challenge my body image, it challenges my body function. I am about to undergo 5 1/2 weeks of constant chemo plus radiation – 5 days a week. I need the port. I am fighting this port. You’re awake when they put it in? really? that sounds rough. regardless…thanks for pointing out the positive. My oncologist tried to explain this to me but I wouldn’t listen. It sounds so much better coming from someone who has one. The side effects of the radiation have me so concerned that in comparison, chemo sounds doable. After the chemo and radiation, I get surgery where they’ll remove my rectum (or “wrecked-tail” as I call it)and part of my colon and they give me a bag. (Not a Tory Burch bag, mind you although I’m thinking of contacting her to ask for some stickers.) If you haven’t figured it out by now, I’m feeling pretty sorry for myself. But thats because its dark, and sleep will not come. perhaps now I’ll sleep, now that I don’t have to worry about “the port”… so glad you’re out here. we cancer bloggers are warriors indeed. Shannon @ greenmonkeytales.blogspot.com

    • Barbara Heizman on July 25, 2017 at 12:33 pm said:

      Its been a long time since you posted this. I’m in the beginning stages of this hell,and hope to GOD I don’t have to endure what you did.But hope you’re well now.

  8. daisybowl on June 13, 2013 at 4:49 pm said:

    I have a port – it looks like Joanna’s. I too did not want one. But the idea of the nurses digging through my rolling veins made the decision easy for me. I was not awake during the procedure but it was still not comfortable. It will be a year next month and still the best decision for me. I own it as a war wound. My ONC says it shows under my skin because I don’t have enough fat to cover it. That is so NOT the case. I wish!

    Best to all of you fighting this C battle – mine is brain cancer.

    Debbie
    my motto: Yesterday is History, Tomorrow is a Mystery and Today is my Gift From God.

  9. Joanna, it was good to read your story because I have fallopian tube cancer like you and it’s rare. Last March I felt very healthy–even went on a short spring break (I’m a piano teacher). I walk and do yoga. Then in April my abdomen started swelling up like being pregnant! My mom had colon cancer so I went to my gastro-internal medicine doctor. He examined me and said very in my face, “You may have something that can kill you!” I had a patient who came in for similar swelling and she had ovarian cancer.” I was shocked. I had a CT scan. Doctor read the scan, and said “you walk right now to your oncologist.” She saw me that day (I had a small breast cancer before) and recommended a gynecological oncologist.

    Had abdominal surgery and they removed fallopian tubes and ovaries that had cancer. But I’m so lucky! Doc found no tumors on my main organs. But cancer was in the fluid.
    I just got a port yesterday. Last night it got red/purple. I prayed and imagined filling it with healing white light and telling it to become white, not red. Within an hour it became so. What a small miracle. It’s true! It’s a bit odd looking so I’m going today to have it looked at.

    Glad to have it for the chemo. I got tiny veins that are hell for IVs–even a blood test! When I had breast cancer, it wasn’t really a problem. But the chemo–I could only do 3 sessions. Doc says this chemo is “more tolerated.”

    Certainly hope so!

    I’d like to hear how you’re progressing.

    Cheryl

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