Friday, June 24, 2011

Navy Beans Heading to Port, sailing with Zometa and Vitamin H

What? What kind of title is that? Has she gone crazy?

Wow, and she was handling it so well.

No silly, that is my new treatment protocol.

Hey, cancer patients need something to get cute about - why not give our chemo little nicknames? Navelbine is sometimes called Navy Bean, and Herceptin is known as Vitamin H. Now we just need a name for poor little Zometa, always left out.

Navelbine is the actual chemotherapy. Zometa is a bone strengthener used for osteoporosis, which also helps prevent cancer from moving into your bones. Herceptin is because I'm HER2 and that's been explained before.

I'll get the Navy Beans weekly, the Herceptin every three weeks, and the Zometa monthly. Got all that?

I'm back to weekly doctor's appointments. That, my friends, does not make me happy.

Navelbine has another nickname: NavelBIND. So, my diet has consisted of all high-fiber foods and gallons of water. TMI alert: so far, so good. It pays to be disciplined about these things.

The treatment itself went as they all do. I was welcomed back to the infusion center with open arms and a few concerned faces. I hadn't been outta that chemo room very long and those nurses know what that means. They hadn't even had time to forget my name.

As before, I was - by far - the youngest person in that room. Don't people under 80 get cancer anymore?

I'd already been stuck in the arm for my MUGA that morning, so I asked for the one chemo nurse who has always had easy access to my veins. And, this time, because it had already been stuck once that day, he couldn't get it. He had to get one down on my hand, and that took a few tries. Unfortunately, Navy Beans is not as sweet as it sounds - it's a vesicant which means it can scar and burn veins and destroy tissue if it leaks out.

You know, like acid.

That means I need a port.

I have very much wanted to avoid having a port. For those not in the know, a port is a device implanted into your chest (for you ER fans, otherwise known as a Central Line) that allows chemo to enter your bloodstream directly and bypass all those small veins in your arms. A port is unsightly, and looks something like a nose growing out of your chest. I'e heard it can be uncomfortable for the very thin, and also gets in the way of bra straps and seatbelts and the like. Being that I have a phobia about anything touching my neck, I tend to wear lower cut clothes, so a port would be hard to hide.

Frankly, my chest has been assaulted enough, and I wanted to spare it that indignity.

The truth is I only have two useable veins in my arm left. And, three days post chemo, I can feel a burning along the veins that were used for the injection. It still hurts in the crook of my elbow where they injected me for the MUGA. So, I am going to have to give in and get a port. I can tell my veins won't hold up.

I was fussing about that idea to my nurse when getting stuck - getting the port feels like giving up and being a cancer patient to me. The elderly lady next to me overheard and extolled the virtues of hers, and said I could get it removed as soon as I was done.

I looked at my chemo nurse and smiled, "When I'm done? When will that be, do you think, Joe - when I'm cured?"

He smiled, sadly.

"Yes, when you are cured, Ann."

We both know that won't happen.


  1. You are a cancer patient and the port will make things so much easier. Mine never interfered with clothes or seat belts and one poke and they are in. It didn't even hurt (might have helped that post bilateral mastectomy I didn't have much sensation in my chest). I loved the simplicity of it. That is until I was having it removed and my plastic surgeon actually called up the breast surgeon from the OR and asked him, "How did we put this thing in?" and while I was fully conscious they start discussing how to remove it. It was one of many, many humorous episodes in my life as a cancer patient. Good luck.

  2. Ann, have you thought about getting a port in your arm? I have very skinny arms (I know you do too!) and I was still able to get one there, and I much preferred it to the chest port.

  3. I have a port and I am very thin. It totally sticks out, more than it does in my friends who are of a different weight than me. I hate my port. I hate the way it feels and looks.

    BUT i love the way it makes my life easier with chemo. I really do. I put a dab of Emla cream on it a couple of hours pre - chemo, and then when she pokes it, I feel nothing, zilch, nada.

    so, at least you know your veins won't hurt anymore!

  4. I too have a port. It is so much better than getting IV's for chemo, but if I were to do it over, I would have had my surgeon put it in (not RAS) and not where they put it! It does stick out, impede seatbelt use and is visible all the time! Talk to your surgeon, they can implant them lower or where ever. Wished I'd have known. I always feel sorry for the elderly patients getting stuck! Good luck Ann!

  5. Hi Ann,
    I had a port inserted too, and when it works it is an awesome thing to have. I say that because every so often one might not work. I've not had any problems with mine however. Since I've lost weight its definitely more visible but not horribly so, and it doesn't interfere with clothing/seat belts etc, but everyone is different I guess. Good luck with it anyway, I'm thinking of you all the time.

  6. I've heard thin people complain that the port isn't comfortable for them. I hope this isn't the case for you. I've had mine over 2 years, and love it. I never even notice it's there. It's actually in the top breast tissue, and I have plenty of that. :) I have a friend who has had hers for nearly 10 years. I also use a lidocaine cream (Emla). I put a large blob on an hour before and I don't feel a thing. I cover it with Glad Press N Seal to keep the cream off my clothes. I was self conscious about the port at first, but I really don't think anyone notices. And if they do, so what? It's not as noticable as being bald :)
    Thinking of you!

  7. Hi,

    The surgeon who did my mastectomy placed my port. He used a low profile one that didn't stick up at all--no nose, just flat. Though I knew something was there and I hated it for the first few months. After that, it was a lifesaver since my veins are just difficult to work with. I did learn that for whatever reason they needed to use a little longer needle to access my port. I had to remind the nurses at first, but after awhile everyone knew.

  8. I also got a super low-profile small port that didn't stick up at all. In fact, the chemo nurses would all exclaim over it - it was a new model or something for smaller people. I didn't bother with the Emla cream, it didn't really hurt to poke it. Good luck!

  9. Katie above got one, and I've mentioned it before, ask about the port in your upper arm. Mine was so well hidden you wouldn't even know it was there and the scar is now undetectable. My port was my best friend. I suspect it will be yours too. The question I have now is that if your white cell counts are low from chemo treatments, how can they perform that surgery? They cannot be use for scan contrast, though. And SOME nurses don't know that and make an attempt BEWARE! As always, advocate for what you need and want - and sometimes that means being assertive, and I know you can do that! :)

  10. I asked my chemo nurses about port in the arm, and none of them had ever heard of it. They kept telling me I must be talking about a picc line, so I gave up. I'll certainly ask the people who are doing it but if my nurses haven't seen it, maybe it' s not common around here.

    I didn't even think of the white counts and surgery! I am not going to be able to do another chemo with this vein - it has been burning for days and feels like there are strings pulling inside my arms. So, they are going to have to put a port in somehow.

  11. I thought the same thing about having a port, but it was AWESOME! It made getting injections so much easier. Plus, anytime I needed to play the cancer card, I just wore a low cut shirt for extra sympathy. Want the last slice of pizza? Just itch your port. Want some extra time on a deadline? Just wear a button up. It's a complete win.

    (Make sure they give you a vicodin after insertion, though. Tylenol is not enough.)

  12. My port was my friend and with a dab of the Emla cream with my Saran Wrap cover it was easy. I don't know about the low profile kind. It must be new. Sounds like someone listened to all the "bump" complaints and came up with a new product. My surgeon who did my mastectomy placed my port deep so I didn't have any bump at all. The nurses always found it just fine. Since you will have it for a long, long, long time, request the new low profile kind, and if they don't have it "in stock" tell them to get it if that's what you want. Just let your surgical team know "no bump allowed". Now it not the time to be passive in what's going to work for you.

    When I was taking Herceptin along with weekly chemo, I had a "partial" dose every week instead of "full load" every three weeks. Is that an option?

    I'm going to have to think about a name for Zometa. How about zucchini?

    Hang in there. I think of you often and pray that you will weather this new storm for a long, long time.............

  13. Hi Ann, the port in your arm is called a P.A.S. Port (peripheral something). I had one for 8 months. It did stick up from the surface of my upper arm and there was a stitch at the end of the scar that stuck out and never really healed. Most of the time I didn't notice it, although it did decrease my arm extension a little bit. After surgery on April 1, the catheter in the vein became an "s" curve. Sorta freaked me out and for a long time, I attributed it to more pain in my right arm, bit once it came out on May 18, my right arm shoulder is still achey. I tense up the shoulder and my computer use increases the tendonitis. But the visible " s" curve started me obsessing about it and I am glad it's gone. It worked most of the time, but twice, they couldn't get a good blood return and they didn't use it for surgery. Seems like that would be one reason to have it. Also they still had to stick me for CT scans. If Incouldn't use it for everything, then why have it? So it was a mixed bag for me.

  14. One of the tech's told me that they are not allowed to access a port for CTs and the like. It has to be an RN or doctor who does it. But, if you call ahead, they can have somebody available to do it through your port. So, that's what I'll do when I get one.

    I'll have to call on Monday because my arm is quite painful now. I know I can't have another chemo without one dammit.

  15. TELL your body it WILL happen! You have a great attitude and that is what all survivors have in common without fail! Mind you 'surviving' can also mean living with an illness for years! : (VERY inspiring this) Any hoo, i had a port (1st time around) and once in, it was actually less stress to be honest (i had probs because i was allergic to the water proof tape they used, but most aren't)... Good luck with it all and (Ps) i think a picc line & a port are the same thing? (i think you can have them in your arm or chest?) Cheers x


  17. Ann,

    I'm so sorry about the burning sensation in your arm caused by chemo. If the port can help this kind of thing from happening again, then I say go for it.

    Sending healing wishes your way.

  18. Hi, I'm Debbi and I was diagnosed with invasive breast cancer 6-23-2011.And will have a double mastectomy 7-14-201
    I will be reading your blog. I just started one too.

  19. Thanks, anonmymous, for the link to the slim port. I am going to specifically ask for that when the appointment is made, and I'm not going to settle for anything else. They can special order it for me if necessary.

    Debbi, I'm so sorry you were diagnosed with cancer too. I hope that your surgery goes smoothly and you recover quickly, and you won't need any other treatment. {{{{hugs}}}}

    Dee, since I only have arm extension on the left side these days, it's important that I keep it! My right shoulder doesn't hurt much anymore but I still can't move it much. I have to be careful about that.

    Thank you all for your comments and advice, it's very helpful.

  20. I had a port, too, Anne, and it was inserted into my chest. My only regret is that I hadn't had it inserted sooner. My veins in my arms were completely shot before my surgeon suggested a port, months after chemo was initiated. Now, when I get my frequent blood draws, the techs. have a hard time getting a good vein. So, I highly recommend the port. Praying for you!

  21. I know you've already gotten lots of good comments on the ports so far, but I just wanted to add my two cents. My neighbor opted for the port right away, and you can barely tell she has it. You can only see the incision line, and it's not in her bra strap area. Maybe yours will be similar! ::hugs::

  22. I had a port placed right before chemo, and it was one of the lower profile ones. At first it bugged me, kept bumping into my collarbone and reminding me it was there (ick) but now it seems to have 'settled' or something, I pretty much forget about it unless my bra strap is pressing on it. But I'm glad I have it, I can't stand when nurses/techs are hunting around for a vein and I am turning green (and my arm is turning black and blue). The port eliminates all that, thank goodness. Good luck to you with the Navy Beans!

