Instead of bitchin’ & moanin’

My first instinct when I sat down at the computer today was to bitch & moan about the fact that I’m rapidly approaching one month post-reconstruction and I still have the 2 JP drains, one on each hip.

Have I mentioned how much I detest and despise these drains? While I understand their importance, and I’m a big supporter of fluid being outside instead of inside my battered body, I detest and despise the drains.

Because of the latest flare-up, i.e., the MRSA infection, the drains will stay for the foreseeable future. It’s a vicious cycle: I probably got the infection from the drains, but the drains have to stay until the infection clears. As long as I’m on IV antibiotics, I need the drains, and as long as I have the drains, I need the IV abx. Twisted, huh?

I’m starting week 2 of House Arrest, and this week isn’t any easier than last. The idea is that if I lay low and do next to nothing, the fluid levels will decrease and I can get the drains removed. But now with the MRSA, the drains need to stay, because if there is infected fluid, it’s gotta come out. Nothing makes me more nervous than infected fluid sitting around making mischief on my insides. I had a crazy idea this weekend: since the drains are staying anyway, why not get some things done around the house? Well, because increased activity means increased fluid levels, and then I’ll be stuck with the drains even longer, that’s why.

Instead of bitching &  moaning ad nauseum about drains and House Arrest, I need to find another topic. My quick run-down of all the positive things about this situation left me uninspired. The usual suspects in my list of “bright sides” seems stale and failed to provide me with the literary verve I need.

But then I remembered my port-a-cath. Yes, the port! That’s a bright spot on this barren landscape of bad news topped by rotten luck. And what a story, too: I thought I needed it for chemo, then I didn’t need it for chemo, and had some trouble with it once I got it, but then ended up needing it for so much more! And voila, the topic du jour.

I used to hate my port. I hated that I had to have it in my life at all. I hated that getting it meant yet another surgery and all the hospital stuff that I detest. At first, it was red and angry and painful, and looked just plain awful. At the risk of sounding like a xenophobe, my body clearly doesn’t like foreign things. First the tissue expander got infected, then the skin around the port got hot and red and big-time uncomfortable. The port made it clear from Day One, on June 25th, that this was not going to be an easy co-existence. The port caused me to spend a Saturday in the ER (Good golly, have I not spent enough time in the hospital already?). Thank goodness there was a “Deadliest Catch” marathon on TV that day, or I would have been fit to be tied.

Questions keep coming in about the port, and after I mentioned it in yesterday’s post, I guess I incited the curiosity again. Here’s Wikipedia’s definition of a port: a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.

I agree with all of that, except for the period being outside of the quotation marks around needle stick at the end of the sentence. The period should be inside the quote marks. Other than that, it’s all good.

While there are lots of different ports, I got the Power Port. I didn’t express a choice, didn’t think about it, but trusted Dr Dempsey to choose the right one for me. I was still healing from that damned infection that showed up after the mastectomy, and wasn’t thinking about which port was best for me. I got the port because the most respected oncologist in my area said I needed chemo, then a another highly-recommended oncologist seconded that opinion, so I was going to do chemo. Long story short, my lymph nodes were clear and my margins were good, but I had micrometasteses, which essentially are cancer cells that are floating freely and not organizing into tumors. Some oncologists consider micromets to be node positive, meaning the lymph nodes are affected, and some oncologists consider them node negative, meaning they have not traveled to the lymph nodes. Some crazy patients, especially those who watched their sweet, irreplaceable mama die from cancer, think the micromets may not be organized, but need to be blasted with chemo anyway.

Yes, that was me.

Statistically, my case was contraindicated with chemo, but I’ve never been a numbers person, and I admit that my initial pro-chemo decision was based on emotion, not statistics or science. I was still reeling from losing my mom, and sure didn’t want my kids to have to suffer that terrible fate. Who am I kidding saying “I was still reeling” — I      AM still reeling and probably will be for the rest of my life. Stupid cancer.

So I reacted emotionally and, driven by fear, decided to do chemo. I had done my due diligence by consulting two vastly different oncologists (one old and established who is super conservative; the other younger than me and quite current on the latest & greatest research, and also highly recommended by a friend in health care. Both doctors based their pro-chemo recommendation on the fact that I was 40 years old and healthy, and able to handle the chemo. Or so we thought.). I wasn’t thrilled with starting chemo — who is? — but was prepared.

Then the mycobacterium entered my life, and 11 months later, is still a huge part of it. The only good thing I can say about the myco is that being sick, sick, sick in the hospital with a post-surgical infection disqualified me for chemo. I was too sick to start it, and my body certainly wouldn’t have withstood it well. In the meantime, we crunched the numbers again, consulted a third oncologist, and I came down off my emotional decision-making high horse and saw that the numbers really didn’t bear it out. Chemo for me would result in a very marginal increase in survival rate.  If the fortunes had not granted me that one small favor, and I had needed chemo but was too sick from the mycobacterium to start it, I would have been a basket case. Much more of a basket case than I already was, that is.

Talk about a blessing in disguise. While I was reeling from and healing from the infection, Dr Dempsey suggested I consult a third oncologist, because maybe chemo wasn’t what I needed. She never thought so, neither did Trevor, and neither did oncologist #3. My cancer happened to be slow & lazy, which is the best kind of cancer to have. Except for the nonexistent kind, that is. So no chemo, just Tamoxifen for 5 years. But I’d already gotten the port.

Nobody ever accused me of sitting on my hands.

The Power Port comes with a handy, dandy patient pack. When I got home from the procedure to insert the port under my skin and into the vein, I laughed at the handy, dandy patient pack. It seemed so stupid, and to me typified the excess and waste that’s prevalent in the pharmaceutic and medical-device business.

There was a pamphlet full of meaningless prose written to allay any fears I might have about the port (like the fact that it’s sewn into the jugular vein. Hello???) and make me feel warm & fuzzy about the little device. It also included a jelly-type bracelet that I guess they expect port people to wear, along with an ID badge with the serial number of my particular device. Why I would ever need this I couldn’t fathom, so I pitched it all. If you were hoping I’d give you the snazzy jelly bracelet, too bad. You missed out.

My favorite part was the list of bragging points:

“Lightweight for patient comfort.” “Reduced artifact.” “Easily identifiable.” “Power injectable.” “Titanium port body.”

Oooooh, fancy.

Despite the goofy marketing, I have to admit that having a port is highly advantageous if you have wimpy veins. And I do have wimpy veins. At first blush, they seem perfectly competent and cooperative, but once the needle pierces the skin, they flop around like fish out of water, making it hard to pin them down (no pun intended).

After multiple hospitalizations for the blasted infection, though, that port came in handy. And it was crucial during the courses of IV antibiotics I have had at home. And it was supposed to be quite handy in my reconstruction, because the anesthesia, antibiotics, and pain killers (lots and lots of pain killers) can flow through the port instead of an IV in the crook of my arm. However, the port was in the way during the Big Dig, and so the Drs S decided not to use it during surgery, even though it had been accessed, and they put an IV in anyway. At least I was asleep for that.

I don’t hate the port anymore.

It still kinda creeps me out, but I don’t hate it. I shiver a little when I think about the fact that it’s sewn into a vein, and not just any vein but the jugular vein. That’s super creepy. I don’t like that the 3 little nubs on the port’s septum are visible through my skin, and if I turn a certain way, the nubs really protrude. I guess that makes it easy for the nurses who access the port, but it looks weird and reminds me that it’s sewn into the jugular. Sometimes it gets crunched when I’m sleeping on my left side, but I’m still not allowed to sleep on my side since the reconstruction, so never mind.

Several people have asked me why I still have the port and when I’m going to get it out. The answer is not until the infection is gone for good. And no, I don’t know how long it will take. Almost a year into it, I still don’t know. I stopped asking, and you should too.

The main downside to keeping the port is that when it’s not being used, there’s some maintenance required. No big deal, just a trip to see the oncology nurses every 6 weeks. Every visit reminds me how fortunate I am, and that my cancer business could have been even more serious. The infection is plenty serious, but at least the cancer side of things was pretty straightforward.

So the port maintenance goes something like this: the nurse puts a sterile drape around the port site and tells me not to look down or breathe on it. She scrubs the top of the skin on top of the port real well with iodine. It’s cold, and the sensation of the iodine-dipped wand passing repeatedly over the port is disconcerting. The smell of the iodine is gross and reminds me of post-infection wound care, without a single happy memory to be found.

After rigorous cleaning, the nurse jabs a short but very thick butterfly needle through the port’s septum, using the three raised nubs to guide her. Every time I’ve had it done, which had been lots, the nurse has essentially told me to brace myself for a really big stick. They do not exaggerate. The Power Port website says, “For most patients, there is only a  mild pricking sensation felt during needle insertion. Frequently, the sensation of the needle insertion decreases over time.”

Lies. All lies.

Sorry if the photo sicks you out, but if I have to endure the “mild pricking sensation,” surely you can manage to peep at the picture.

Once the super-thick needle is in, the nurse attaches it to a thin tube that she can then attach a syringe to and inject whatever needs to be injected: chemo drugs, antibiotic, pain killers (yes, bring on the pain killers!) some contrast dye for certain scans, or in the case of port maintenance, saline and heparin.

After I’d had this process done several times, one of the chemo nurses asked me if I had used the numbing cream before that day’s appointment. Numbing cream?? What numbing cream? No one had ever mentioned that before.

Well guess what–there’s a numbing cream. Lidocaine and Lanocaine and some other caine all whipped up in a prescription cream that will make the port maintenance so much more pleasant. Yes, please. It does help (when I remember to apply it before my maintenance appointments), and Macy and her friend Ella both used it on their earlobes when they got their ears pierced.

So every 6 weeks I get the port flushed–sometimes with and sometimes without the numbing cream. No big whoop, although one day it bled quite a bit after the needle came out, and made a bloody spot on my most favorite white hoody that remains even after multiple bleachings. Perhaps it’s a symbol of what I’ve been through, and of how much I can endure. It’s a reminder not to whitewash the bad stuff, to leave a hint of the gore around to bear witness to the hard times and rough road that one must travel, sometimes precariously, sometimes fast and sometimes slowly, to get to the other side.


17 Comments on “Instead of bitchin’ & moanin’”

  1. Eddie says:

    Wow. I did not expect a post about a medical device to have such an emotional impact. I expected dry and clinical, instead your writing moved me. You brought it together so well that it speaks to life and all struggles, not just cancer and your life. PLEASE keep writing.

  2. Christy says:

    You know me….I was doing fine till I saw that gross picture. Hey, but thanks for sharing! Honestly, you are one tough chick, and I love you for it!!!! Keep up the good fight. Even that stinky infection can’t take you down!!!!!!!!!!

  3. Michelle says:

    I love this post!

    Not only do I get the thing about medical mishaps, I most definitely had issues with my port too. Well, mine were human error, not infection. But still, nasty.

    I had only one chemo so far with it in so I am unable to say ‘it’s worth it’ quite yet. I sure appreciated having it (especially since I knew about the numbing cream ahead of time and felt nothing when they poked me) But since I’m ‘only’ doing 4 sessions of chemo, I sometimes wonder if it was more trouble then it’s worth? Then, of course you hear stories about how hard it is to get the IV’s in your vein, and then I’m back on the ‘it’s a good thing I have a port’ bandwagon. I dunno anymore?

    PS – you are not the only one to make ’emotional based’ decisions as to chemo… my case is also considered ‘node negative’ but with micrometasteses under .2mm… they told me I could ‘chose’ not to have chemo, but I have little kids, so really, was there another choice? I don’t think any of the choices around cancer are easy. And the complications are terrible.

    Throughout the ‘journey’ – i sooo hate that word – we go through so much that is very difficult for someone who hasn’t been there to understand. Just something as ‘simple’ as a port, most people (thankfully) don’t even know what it is or what it does. And it looks gross, so most of my friends don’t even want to look at it.

    Although you are the second person who talked about having a card with their port, and I am feeling very left out. I should call my surgeon and ask for my card. Where’s my handy dandy patient book with the fetching neon bracelet, huh?

  4. Nancy of all the things that damn port just freaked me out, i couldn’t touch it without getting the willies. Getting it put in was the topic of a blog for me, it was the first death…it sucked.

    Press and seal, put a big glob o lidocaine on it and press and seal for about an hour before….

    thinking about you and miss mrsa, hang in there.

    lauren

  5. Trevor Hicks says:

    One of the things I found extremely frustrating was the difficulty in finding actual data about recurrence rates. All the websites tell you to ‘ask your doctor’ or some crap. I have tremendous respect for Nancy’s doctors but we don’t need to be protected from the truth or the data. I’m traveling & on my phone but when I get a chance this week I’ll add a comment with some websites I found most useful.

  6. Barb Fernald says:

    Is it just me or does the port packaging resemble the packaging for a flea collar?
    Promise when all this is done you won’t stop writing. I really love reading your blog posts.

  7. wendy says:

    When I got my port, I actually left the surgical tape on the bit over my jugular vein for about a week and a half–I was pretty certain that pulling it off would result in BLOOD AND CHAOS. It still makes me uneasy when I think about it, cause I don’t think we should ever have anything inserted into our jugular veins. EV.ER.

  8. […] is still a bit of a hassle since my port-a-cath is accessed. That means the needle stays in, through my skin and into the port, so I can administer the IV […]

  9. […] 20 gauge needle is what is used for port access. It has to be big enough in diameter to not only pierce the skin and the membrane of the port, but […]

  10. […] my port is accessed, i.e., has a butterfly needle piercing my skin and the port to deliver medicine, it has to be […]

  11. […] Press ‘n Seal has many domestic uses, it has a medical use too: covering one’s port while said port is slathered in numbing cream, before facing the 20-gauge needle used to puncture […]

  12. […] parted ways, him to daydream about beating me in tennis while I headed to the infusion room to get my port flushed. For the last time. […]

  13. […] the idea of another post-surgery infection is not my idea of fun. Being told we need to keep the port that I’ve been so looking forward to having removed was equally not fun. I’d actually […]

  14. […] I’m pissy about the fact that I’m still battered and sore. I’m ready to rip the port right out from under my skin because it catches on my clothes and shoots a sick sensation up my […]

  15. […] #2 in the “this is really great department” was the very last port flush. Hooray! I’ve had my port for almost 18 months, and it has served me well. It’s made my […]

  16. Nancy says:

    I’m so glad that you shared this. I had a put on my arm and then it got infected so they took it out. Then I had a pic line in the chest and they said I wouldn’t need it for this new chemo I was on. So I went to get my chemo today and after a while my vein rejected it and I dunno what happened but it began to burn inside and the machine began to beep and then a big bubble of medicine was just floating under my skin. So I am getting another port tomorrow. I am really nervous, but after reading this now I feel like I’m not crazy, my veins are whimpy too. They poked me all over for about an hour and a half and got nothing. It was horrible! Back to sqaure 1! Thanks for reminding me I should be happy to get the port again, 🙂


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