Thursday, September 19, 2013

the best laid plans

The good news is, I have a new port and it works.

The bad news is that I found it a much harder experience than I had anticipated.

And there's some other stuff that's kind of in between good and bad news. I haven't decided yet.

My friend Lise picked me up early on Tuesday morning and we arrived in plenty of time for my 8am appointment. I really, really liked the nurse doing intake (and I told her so when I left) and Lise stayed with me for as long as she was permitted.

That part was just fine. I didn't even mind too much when the nurse had a hard time accessing a vein for my IV - I was in for a new port precisely because my veins are hard to access.

Tasha, the nurse, told me that I had ruined her "one poke record." I reassured her that she shouldn't blame herself and that it shouldn't even count because "I'm special. How many people go through years of chemotherapy and actually live to tell the tale?" She liked that and agree that I am pretty special.

I spoke with Tasha about my expectations about my port surgery, "In. Out. All on the left side" and she confirmed that was what was written on my chart.

Unfortunately, the surgeon had other ideas. 

He came to see me with the consent form, as I lay in a hospital bed, in the hallway, already hooked up to IV. I was all by myself. I can't remember his exact words but he told me in graphic that he would have to "rip through" scar tissue to put a replacement port on the left side. He said that the possibility of infection was much, much higher and that it would be "100% more work" for him. 

But it was up to me.

I still don't know what I should have done and I felt very pressured. I could have asked for more time and put off the surgery. I could have insisted that he try the left side.

I chose the path of least resistance. I signed the consent form and the surgeon said, "This is what I would tell my wife she should do."

The surgery itself was pretty uneventful, although I was told I would forget and I have not. I know that I slept through lots of it but I remember him sewing up the right side and most of the removal on the left.

When I had my old port put in 6 years ago, there was only one surgeon, Dr. Waters, doing portacath insertion. Now there are seven and Dr. Waters has moved on to other things. The surgeon from last Tuesday told me that portacaths are usually always on the right side unless the patient is going to have radiation on the right. I've already had right-side radiation, so, according to him,  there's no reason not to do the right side. 

However, while I was drugged up during surgery, that Dr. Waters actually preferred left side ports, so I know there is at least one surgeon out there who thinks left-side ports are just fine. 

In addition to the vanity of keeping my scars on the same side, I was concerned about the fact that my right side is already tight and sore (I seldom feel comfortable wearing a prosthesis) and I have truncal lymphedema (which no one seems to understand, except the folks who have it). If cuts to the arm can make arm lymphedema worse, then wouldn't surgery to the chest worsen truncal lymphedema?

Perhaps this was the right decision. Maybe it would have been excruciating and difficult to put in a port on the same side as my old one. I've just found doctors and nurses to be dismissive of the pain in my chest and ignorant of truncal lymphedema. It's hard to accept reassurances that the port won't make these things worse, when doctors have never really understand that they exist and are serious in the first place.

I've been really, really sore for the last couple of days. They told me that Tylenol would be enough for the pain but I was glad that I still some more serious painkillers on hand to get me through the nights. I'm not sure if the medical team just underestimates how much it all can hurt or if I hurt more because the right side was a mistake.

The port worked beautifully on Tuesday (the same day as the surgery). Tomorrow, I'll have my bandages changed on both sides and the needle and tubes removed that have kept it accessed. That should make me more comfortable.

It's been a tough couple of days, compounded from the usual challenges of treatment weeks.

Hopefully, by the weekend, I'll be feeling much better about all of this.


sassymonkey said...

Do you need anything? We'll be heading downtown on Saturday for race kit pickup (Army Run) and I can drop stuff off? Or can provide my lovely company? Lee is available as well and always willing to try to sell your child on the many good qualities of bacon.

Melissa said...

Just *hugs*.

Lene Andersen said...

I don't actually give a rats arse if it would be more work for him and I don't like the way he pressured you, but... a higher risk of infection when you're immunosuppressed is concerning. I think you made the right choice. And if it ends up hurting consistently, is it possible to try to move it back on the left?

And now that I'm done being logical, sending lots of love and careful hugs.

Jim's Girl said...

I understand how you feel. I'm considering backing out of my port insertion next week. I've been waiting for R. to call me back about it. Do I really need a port for Herceptin and Pamidronate? My veins are pretty good, but a little hard to find. I know I'll need chemo again some day; I could get a port or PICC then. What do you think?

Kate, of Kate Has Cancer

laurie said...

Sassymonkey, Thanks so much but I'm going away tomorrow. Delayed by a day but I am going (dammit). I would love to witness Lee lobbying Sacha about bacon. :)

Melissa, thank you. xo

Lene, I don't really have suppressed immunune system (maybe slightly) because I've been off chemo for 5 years. And there is no way I'm going through this again. The damage on the right side is done, so hopefully there will be no consequences. Also, much love and careful hugs back to you.

Kate, I really need a port because, after 5 years of chemo, my veins are wizened little things. Last time it was really worth it. And the last 2 treatments without a port, I was covered in bruises. You need to decide what will be more convenient for you, not them. If you don't find treatment traumatic without a port, you don't need one.

Jim's Girl said...

Thanks for the advice, Laurie. How are you feeling? Is it healing well?