Thursday, September 29, 2011

The Cyclical Nature of All Things, and The Port

As I come to the end of round two, with round 3 set to begin next Monday, I feel surprisingly good. Oddly, I feel better here in the final week of round two than I did in the final week of round one. Chemo is cumulative to a certain extent, and it is pretty normal to feel progressively worse overall after each consecutive round.

My best guess for why this is that that I'm on a smaller amount of drugs overall. The pain has lessened over the past week, disappearing entirely at times and -- when it does resurface -- is managed with over-the-counter Acetaminophen. This is a far cry from the time, just a month ago, when I was hospitalized with pain and the narcotic painkillers they used there had only minimal effect. As the chemo progresses, the pain lessens. This means I take fewer painkillers, which means I have fewer side effects, which means that I take fewer other drugs to counteract the side effects that the painkillers create. Also, I switched a few weeks ago from the methadone to oxycontin. 

Pain-wise, much will be revealed next Monday at the start of round 3. Previously, the back pain has traditionally spiked a within a day of getting chemo. If I can get through this next treatment on Monday with no (or minimal) back pain, I'll start tapering off the oxycontin. To compare, the painkillers and side-effect-producing drugs that I have been on have more side effects than the chemo. Which is saying something. Just regular old chemo is a refreshing spring breeze compared to the armload of drugs to cover up the pain.

I have been doing normal-person things and having a surprising amount of energy (for a guy on chemo) in the past week. What this translates to is that I'm able to fully look after myself, including driving, shopping, laundry, dishes, walking the dog, etc. I still get tired, and fight some residual nausea, but I'm learning (or relearning) how to manage these things as well. I'm pleased that I'm able to even help others with their stressful situations at times, which feels good. The (seemingly) one-way flow of care from other people to me is extremely touching, but feels like a huge imbalance is created and a debt of gratitude arises that feels impossible to repay. I know: this is not some scales that must be balanced, but it's nice to be able to give back when I can. I asked recently after a friend's health and he seemed surprised that I'd be asking. This actually hurt a bit: it isn't some sort of competition. Just because I have this stupid disease doesn't mean that I stop caring about those around me. Is my disease more serious? Who cares. I still want to know about others and just because I've got this thing going on doesn't mean that people can't tell me about their problems. I appreciate it when I'm allowed to provide support in some way. As I said, I feel like I've been the recipient of a lot of caring, and if I can pay it forward in some way it makes me happy.

Port Woes

I'm still having some problems with the Port a Cath (the borg implant in my chest that allows them to "quickly and painlessly" poke me to take bloods and do chemo. Something to do with the placement, or my skin, or who knows what, means that the regular needle isn't quite long enough, and so it pops out. 

I'm attaching some pix so people can visualize what I'm talking about. Sorry if you don't like looking at needles. I really don't like looking at them either.

The purple thing is the port. It currently feels like a bump under my skin. The needle goes in the porous area with the 3 bumps, which is "easily located". What this means is they push really hard on my chest with their fingers, trying to find the 3 bumps. The other odd contraption with the tag on it is the needle assembly.

So, the normal needle pops out. And then nurses say, "that shouldn't happen." I've heard this more times than I can count, and let me tell you: I never get tired of hearing it. The solution appears to be to use the longer needle, but that one is just a tiny bit too long, so it is a little unsteady and wiggly. If that sounds like something you don't want to experience: you are correct. I do not recommend it.

Because they've had so much trouble accessing the port, I get anxiety and nausea before they even begin. I realize that this is psychosomatic, but understanding where it comes from doesn't really change the outcome. Right now my main concern with chemo is the needle poke and the the actual infusion process. I feel bad when an experienced nurse tries to start the IV, fails, gets another nurse, who also fails, and they eventually get the experienced one who nails it right away. And then everyone is embarrassed because they couldn't do it and they know that they're causing me pain. And then I'm jumpy because they've already poked me 3 or 4 times so I wince no matter what. But for some reason I have a hard time saying, "you look young. I don't think you'll be able to do this." 

So, is the port better than the arm IV? Overall, no. If you have a good nurse or phlebotomist, its easy in either case. Having a 1" needle pushed hard into your chest is no cakewalk, even if they get it right, and is at best a very unpleasant sensation. Overall, the port has been more trouble than the arm IV. The plus to the port is that the chemo can run faster without pain, burning, pinching, or cold, all of which sensations the different drugs give. There is none of that during actual infusion, but if they run it too fast the nausea sets in. Mainly, I decided to do the port for the later rounds of chemo, where the veins have traditionally deteriorated and it becomes harder and harder to find a vein. 

Anyhow, lets hope that the back pain stays away and that I continue to feel better. At the end of the next round (in a little over 3 weeks) I'll have a followup Pet/CT scan that will tell us how much we've shrink the tumor and lymph nodes, and whether they can still see spots in the lungs. This will determine how much more chemo I'll have and I'll be anxiously awaiting the oncologist's interpretation of the scan. Much to be hopeful for.


Anonymous said...

This may sound ridiculously simple, but have you tried the ginger candies from the co-op, for the nausea? I remember that helping during pregnancy. Thinking of you often!
Lynn S-M

Cathy Crea said...

I wonder if you could humbly ask whoever you check in with for chemo to make sure you get an experienced nurse since you've had trouble with the port. It would be nice to think there's a note in your medical file to this effect, but I realize sadly that the real world does not work this way.

TootsNYC said...

I'm w/ Cathy--ask for the successful person each time. Get her/his name, or simply say, "People have a lot of trouble w/ my port--can we start with someone with a lot of experience?"

No need to be the practice dummy for the other people unnecessarily.

I'm glad you've had some time feeling better.

I know what you mean about wanting to care about other people even if you're in the middle of your own crisis. If nothing else, it's distracting, right?

John Slade said...

Well, sounds like no news was good news, in this case! Since we're all out here in the open, when I don't see you post I worry that you're isolated. Since my daily-ish checkup on you is checking out the blog, I can't tell if you're feeling isolated and isolative or feeling cheery and too busy to blog. Glad it was the latter!

I have my quarterly tubes of blood, and I think I'm at about the 20th percentile for hard to draw blood from. Veins hide, chubby elbows, etc. And the good nurse got moved off my doc so I see other nurses all the time, and it's an issue. I would offer that you are totally in your rights to say - hey, I know these ports are supposed to be easy, but mine is really finicky. I'd really like your best needle-sticker (or phlebotomist, or whatever you call it) and if they say it's all good, mention how many times the regular needle has popped out.

So are you playing WoW at all? My nephew could use a play buddy if you've got a character in his range (26). I'd play with him but he's on my account =) Probably you're not currently paying the subscription though...


M said...

@ Lynn - I haven't tried the ginger candies, but I do have some real ginger soda that helps. Mostly, I rely on eating to keep it down and the antinausea pills when it can't

@Toots - I do agree that being more assertive here is helpful. THis time I watched the nurse (one that I'd worked with before) setting up the needles and said, "what kind of needle are you using today?" Clearly thinking it was a stupid question, she replied somewhat snarkily, "3/4", 20 gauge?" I replied that there is a note in my file: they need to use the 1". SHe didin't say anything and walked away, geting the 1" needle.

No one reads my file, even though they're all supposed to. In the end, though, we're all in charge of our own medical care.

@ John - not WOWing -- just couldn't keep up with the upkeep and world reboots. I hated having to re-spec every one of my characters every few months, and I didin't care for a Cata world destruction. I found that it took a minimum of an hour just to figure out what I was going to do and get where I needed to be. I agree that this is the time when I really could devote 8 hours a day to it, but my back pain is aggravated by sitting in a chair for too long, so it hasn't really sounded good. I'll get back on eventually (and I do miss the halloween themes) but it will be a while for sure.

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