More Port Ponderings

I've had the new Bard Power Port for about three months now I think. Once in a while I still get pain twinges on the skin covering it, and I suspect that something to do with depleted hormones affects scar healing.

As shown in this lovely picture, it sports "a unique triangular arrangement of three bumps called Palpation Points on the soft top of the port", making the needle target easy to find.

They look obvious and hard to miss. I am, however, still feeling angst over the fact that I can only palpitate one palpatable point. It is the one at the lower point of the triangular configuration, and is clearly visible through my skin. In fact, sometimes I wonder if it is possible for it to eventually wear its way THROUGH my skin.

I am not sure which bothers me more, that this one may pop through, or that the other two are seemingly nonexistent. They are clearly in the picture. The doctor and the nurses close their eyes and feel for them, and swear they are right there in place. Why then, is ONE so clearly prominent, and the other two, of purportedly the same size, impossible for me to feel?

This doesn't bother me as much, though, as wondering if it is possible, however rarely, for the catheter to pop off the little purple end. Sure, there are ridges, but I don't see anything more secure than that. Sitting low on my chest, and down into breast tissue, it doesn't exactly rest securely in a stable spot. Boobs MOVE. Big ones move even more.

When I had the placement procedure, the doctor taped my breast down, to keep it from falling down under my arm while on my back, and thus skewing placement. Good plan, but when I sleep, on my side, I do not wear tape. This is difficult to explain, and I fear I did not impress my concerns properly upon my physician. I think he thought it was just a bit of a chat about my breast. My concern is that it will move around and flip, or unplug.

I haven't had an honest to gosh put-on-the-paper-gown breast exam in over a year. Last month he did feel around my lymph node area under my arm. Tuesday, I am taking my fabric substitute for the paper gowns that never fit, and insisting on an exam, and showing him what the port does when I lie on my side.

Yes, it's a pain to get undressed and dressed again, and yes, for awhile it was difficult to do my own bra, and yes, regular scans should, in theory, suffice. But the time has come. I don't care what he thinks, and if it makes him somehow uncomfortable, tough ****; he's a freaking doctor.

Not that I don't adore him. I do. But sometimes I feel like I don't get as much attention to detail as I would like. I know that none of these questions will effect my prognosis one way or the other. So I guess I need to reiterate that to him - I don't care that nothing is going to make me GET better; my main concern is FEELING better, or at least not feeling worse for as long as possible, emotionally and physically. Avoidance of stress and pain, with the clear understanding that I accept this prognosis.

With that said, it is also time to get another scan done. Even considering a scan or possible spread brings on the 'scanxiety' and tears. I wonder at it, since I know how this story ends. It must be the fear of not being able to avoid the pain and discomfort as this disease progresses. Scan time makes me step closer to my mortality in my mind's eye, dropping the drapery of denial that keeps the prognosis at a more tolerable distance.

Definitely making a good list this time for the doctor.

The Bard purple Power Port

Sleep hath eluded me. I feel sleepy sitting here, but I followed my ritual and still felt bored lying in bed.

Bedtime Ritual:

1. Log off the computer at least a 1/2 an hour before I want to go to bed.
2. Ask Bradley to get me my medication / supplements for bedtime. I'm getting tired; too tired to think hard enough to find my own medicine. That should be a good sign.
3. Head for bed, soon to be joined by the cat who has claimed one of my pillows.
4. Play game 1 of my handheld electronic Phase 10 game.
5. Pop that last sleep helper, now that I have settled in a bit.
6. Play games 2 and 3.  I have found that three is enough to get me tired, but 4 is enough to wake me back up, and long enough for my hip to hurt from lying on my right side.
7. Roll over and attempt sleep.

Tonight it didn't seem to work, and I found myself staring at the ceiling, thinking of the writing I have not done, wishing I were better at it, and needing to use the restroom. I should probably do that now.

It's been 2 months since I last wrote. Every time it seems I think about doing it, I'm really too tired for it. I may not get much further than this, but here goes...

It's been nearly two months since I gave up on the search-and-destroy game with my veins, and got a new port. A Bard purple Power Port. Yes, I love the alteration, but have failed to come up with a name to fit in with it. I wanted to name the port, but nothing is coming to me, nothing feels like "it". Perhaps, after only one accessing, we are not yet bonded enough, my port and I. I must say, however, that my first accessing of it, almost four weeks ago, was a breeze! No tears, no white knuckles, though I had them ready and in place should I need them. Accessing number 2 in four days.

It was a hard decision for me to get another port. In my mind, port equaled chemo, or at least the resignation to the idea of some day having chemo again. Four appointments of blown veins, small veins, multiple attempts, crying, yelling, tears and sobbing finally changed my mind. The procedure was quick and done under twilight sleep (no, they did not make me watch Vampire movies...) with that lovely drug, the name of which escapes me.

This is a picture of the very port I now have hidden beneath my skin, at the top of my right breast. I wished that the purple were glow-in-the-dark purple, and that is showed through my skin in the dark. That would be cool.

Of the three bumps the literature assures me are there, I can only feel one. This one bumps is so prominent, I cannot understand why I cannot feel the other two! Maybe when the incision heals up more completely.

Speaking of the incision, the liquid bandage stuff they put over it lasted nearly three weeks. In one spot, I could see a bit of blood. When the thing finally came off, the blood had coagulated and the skin did not adhere to itself as nicely as I would like  in one place. A week or so ago, I noticed a white spot in the unadhered area. Thinking it was skin, I picked at it a little. It seemed flappy, and flat, but I could not get at it with my fingers. I got my tiny tweezers and plucked at it. Out came a suture, about an inch long!!  My imaginary scenario is suturing the four anchor places, cutting the thread, and not picking it up before the incision was glued shut! No harm; it didn't hurt at all. It's still not really healing well in that spot though.

The only thing that really bothers me about it is, well two things maybe, that the sticking out part could have been the source of blood leakage which caused the scab which didn't let the skin close up smoothly, and that it just really speaks of being in too big a hurry during a procedure! I mean really! I don't even like to think about how they shuttle people in and out of those outpatient procedures. The nurse assigned to be with me during it was very nice and helpful; I'm just a tad annoyed over the hurriedness that must have led to leaving a cut piece of suture sticking out and then covering it with liquid bandage!

The placement is much lower than my original port in 2006, and it is smaller and less prominent. The small incision where the tubing is threaded into the blood vessel is about an inch higher than the not-so-small incision from my original port.

This is how it works: the tubing goes up, beneath my skin, and is then threaded in to blood vessel to turn and go down.  Special clamp safety needle thing must be used for these Power Ports, which are thus named because they can receive more powerful infusions, such as are necessary for dyes used in scans.

I am pleased to have it now, and hope it lasts a good many years, possibly as many years as I have left.

I have more to write and whine and ponder, but I find I am feeling sleepy. This is a good thing, yet I must be sure to get back to this before long. I shall leave myself some clues, and see if I get back on the right track - I need to confess more reasons for why there hasn't been much posting action here, and ponder and discuss my feeling toward death, a topic over which I sometimes obsess, and which was brought up at a party by my good and dear friend Jamie.

But for now, Second Chance for Sandman...!