My PICC line

by Susan, IBC survivor, and crossposted on Toddler Planet.

PICC lineIf you saw my post on Toddler Planet yesterday, you may have wondered, “What is that?” and “So what?”

Well, the short answer is that it’s a PICC line, a peripherally inserted central catheter. I tried to do the research and tell you all about it, but I keep getting ooked out by the concept of a long (43 cm) tube threaded through my vein with a wire and inserted near my heart. And the line hanging out of my upper arm, dangling about my elbow. So, I invite you to read the link above (from the NIH) if you’re curious. There’s also a diagram there which explains it pretty darn well, without a single word.

It’s not painful, but it is uncomfortable and … well, weird. I had to have the line put in when I was at the hospital yesterday — which I visited only because my primary care physician insisted. By which I mean she told me to go, and when I refused (twice), she brought in another doctor to confirm it and told me that either my huz would take me (he drove me there, naturally) or she would call an ambulance.

We went to a different emergency room than the one that almost killed me last November. We were ushered to triage nearly immediately, and wheeled (oh, joy) back to a bed before you could blink. A nurse, a registration tech, and the doctor all visited me before I had time to put a gown on. It was nearly the exact opposite of last year’s trip to the ER. They were worried about appendicitis or something acute, so they needed scans. I was happy to oblige, even though my regular scans aren’t quite due yet, but I had a problem. Niether of my arms can take needles. Both arms have lymphedema now, and they will swell up with a single scratch, paper cut, or burn from a hot pot on the stove. An IV would push the fluid into my arm … but not out. The nurses also needed to draw blood.

So, after all this time, I got my first PICC line.

The line was inserted in the hospital by a physician using ultrasound images to guide him. Dr. D. has done 9,000 of these PICC insertions and his partner has done another 5,000. Of those 9,000, he said afterwards, only 3 have even been able to feel the tubes in their arm and chest. (Guess who said, “Hey, am I supposed to feel that in my arm and shoulder?” prompting that discussion? So now his number is 4.) Nate and Nancy, the assistants, were just lovely, getting me a pillow, a blanket, and an armful of betadyne to sterilize my arm (elbow to shoulder, fellas? really?). I was reassured, and didn’t look at the screen once during insertion. I was really okay about it — until I was leaving and Nate said over his shoulder, “She had really small veins! When we get back, I’ll show you — we took a picture!”

Nice, Nate.

So we got the tests done, and, after several hours and hundreds of prayers (one call to my friend Jess, and BAM! the church prayer chain got activated in full force!), we were dismissed, with no diagnosis but a CLEAN scan of my lower abdomen and pelvis — no gross cancer (YAY!), no appendicitis, no gall bladder issues, and pretty decent CBC counts. “Go home and rest,” they said, “and follow up with your oncologist tomorrow.”

Yeah. Right. I did, of course, knowing full well that a little tummy trouble (bent-over pain in my abodomen) wouldn’t even register on her radar. And indeed it didn’t, with me playing round robin as I called all the doctors to ask about my low red blood cell count. “It could be from radiation. Call your radiation center,” said the nurse. So I did. “We don’t do anemia treatment here,” they said. “Call your primary care physician.” My primary care physician said, “We’d feel better if you called your oncologist.” My oncologist hasn’t yet returned my call.

But I did learn that the four weeks of recovery that I’d been told? Not exactly the case. The radiation center assured me that it’s not unusual that I can’t move around much or get out of the house without assistance, saying, “It takes at least as long to recover from treatment as it did to get treatment.” Notwithstanding the fact that that sounds suspiciously like the “9 months up, 9 months down” bullshit that they told us about pregnancy fat, if I believe her, I won’t be back to normal for at least another 6 weeks. LOVELY.

It would be okay if I weren’t starting chemo the first week of August. ARGH. I have no idea how that will all work out, or whether I will be able to travel on our family vacation, up to see my parents, or out to Oregon for my brother’s wedding (which is ON my mind and pestering me, as I REALLY want to go!) in late August. It bothers me not to know. But I suppose not knowing is better than knowing I’d not be able to go. I’ll take it.

Oh, and about the PICC line? I don’t think these things were designed for homes with preschoolers, as bedtime and mealtime are now (unfortunately) punctuated with gentle reminders, “Don’t push Mommy, please,” and “Ouch!” The kids have been told not to crawl on me, and the little one is not to hook his “rescue rope” onto my arm or necklace, since the hook could catch on the catheter tubing and pull the dangling end through my vein. (Yuck.)

On the bright side, the PICC line allowed me to get my PET scan today, which will be read by the radiologist, sent to my oncologist, and she will tell me whether the cancer is gone or back just before BlogHer.

I’m betting on gone.

By the way, I just saw a lovely mention of Toddler Planet in D.C. Blogs’ FAQ: Are Bloggers Virtuous? Isn’t it lovely? Aren’t they darlings? That makes me smile six ways from Sunday.

4 Responses to My PICC line

  1. marty says:

    This is probably going to sound weird (to most everyone except you), but this is my favorite post you’ve written thus far about all of your treatment.

    I’m glad you are home again. You and your appendix.

  2. Spruce Hill says:

    Sorry to hear about all the runaround. If you can do a picc line you can do a port. You can do everything from one blood draws etc. It makes life so much easier!

  3. Lyn says:

    Susan, I had a PIC line at first also. The port was going to take a few weeks and I needed treatment ASAP, so I had one inserted the morning of my first treatment. I hated it, and I feel for you. I agree that if you can do the PIC, you can do the port. I am not a fan of either but I did it, and you can too. Also, if you come to Oregon, let me know, as I am here and would love to see you. Lyn

  4. Kristen says:

    Holy molybdenum (spellcheck did that haha) susan You are my hero that you can share your journey so generously and accomplish so much. That’s fantastic your lower abdomen and pelvis are clear. I’m praying for your clear pet. mod*tot wanted to know whybyour arm looks bloody. You poor mama

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