What is that?

PICC lineIf you saw my post 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. 

29 Responses to What is that?

  1. Bon says:

    gone. i offer up this please, that it be gone.

    as ever, i am humbled by the strength it must take to deal with the craziness of all of this, and my eyes are on the strength that i hope is slowly (too slowly, i know, but still) seeping back into you, bone and muscle and heart and soul, as you move further from the radiation.

    i hope there is some respite, between here and the chemo. i send you love and rest and strength and patience in the midst of all this circus.

  2. Niksmom says:

    Bon said it excellently! So I’ll just say “Yes! Ditto.” Sending healing thoughts and prayers your way daily.

  3. Linda Lawrence says:

    Thanks for answering all of the questions I wanted to ask!

  4. Kristen says:

    oh, strength! Please come back. I will pray that Little Bear discovers the best way to show his love and to check his box of connection needs without any risk to ripping out the PICC.

    You are strong. You can do this. Does this mean our drink at Blogher is at risk? I already saw on Twitter that we will be hanging in the lobby. I’ll bring the tiaras and boas.

  5. *m* says:

    “Blogger of exceptional capability,” indeed. And they could have substituted or added any number of other nouns: fighter, advocate, scientist, mommy.

    Feel better, Susan. And I’m putting my money on GONE.

  6. Robin says:

    You. Me. And a virtual blogher. That’s how our relationship started. You were wearing a tiara, I was still naked. 🙂 You showed me how to find clothes and work my way around a new world – second life.

    Since that day you’ve shown me so many world and still never cease to amaze me. Your posts anger me, make me sad and feel so helpless sometimes. But only because I want to make all this go away for you. Gone. Gone. Gone.

    You amaze me. You’re giving, loving, kind, brilliant… So many adjectives and so little time…

  7. Joanna moore says:

    I have read your blog for a long time, but I don’t think I have ever sent you a comment. I am sorry you are going through all of this I have IBC but fortunately, I have not had lymphedema issues. I was wondering if a port is a possibility for you. I have had a port for 2 1/2 years and it causes me no problems at all. That PICC line looks uncomfortable. When I had the port put in, it was sort of a non-event (at least compared to all the other junk that treatment comes with.)

    When I first started researching IBC, I found your blog. I wish a very speedy recovery.

    Joanna

  8. Stimey says:

    Me too. Gone.

    Geez, Susan, I wish you could catch a break on some of this. Hang in there. Here’s hoping all the good news is to come!

  9. Do you think we can just put Sangria in your picc for BlogHer? I think that might be okay, right?

  10. Kristin says:

    I’m betting on gone, too.

  11. Ai yi yi. My brother is a nurse and he is specially trained to insert PICC lines (yes, normally docs do it but go figure, they let my brother do it too). So here’s hoping you don’t need another….but if you ever do, you can see him!🙂

    Here’s betting it’s gone and looking forward to giving you a big hug at BlogHer (finally!)

    You are such a trooper.

  12. Elaine says:

    Wow. You have given meaning to treatments several of my friends have received. Your writing has made me see the treatment phase in a different way. Thanks! And gone, definitely gone.

    And dude, sangria in a picc line? I’ve only met Devra in person once, but she proves that she’s the most hearty partier ever. I bow. I lost that ability two pregnancies ago.

  13. NYFriend says:

    I’m betting on GONE too!🙂

    So your “tummy trouble” – no answers on that? I hope it’s just something you ate! (Though it sounds like you were feeling a lot worse than any food-tummyache.) How’s your throat feeling? When I saw your post yesterday, I googled PICC, and came to the wrong conclusion that you had one put in for chemo. Which I was confused about since I thought you are on deck for chemo pills, not chemo IVs. I hope that’s still the case.

    Sending you lots of gentle hugs & hope!

  14. Susan says:

    My littlest just came in for his morning snuggle and I had to remind him not to lie on my PICC line — he called it my “pickle line” and we laughed and laughed.

    Back to snuggling–

  15. Kate @ upsidebackwards says:

    I reckon even Paul the Octopus would be betting on “gone”. Feel better soon! And enjoy those morning snuggles, mmmmm yummy! 🙂

  16. oh, Susan.
    I so admire your strength and sense of humor through this whole thing. Sending you well-wishes as always, my friend.

    Now get back to snuggling with your super-cutie pie.

  17. magpie says:

    I’m betting on gone, too, and I’m hoping to see you here in August.

  18. Amber says:

    Hello–
    I’ve been following your blog for awhile but haven’t commented before . . . I know you don’t have the energy for this, but do you know anyone that knits? Here is a pattern for a PICC line cover that might help your little ones snuggle with a little less caution.

    http://www.knitpicks.com/patterns/Picc_Arm_Band_Pattern__D50510220.html

    Here’s another vote for gone.

  19. Lisa says:

    Hi Susan

    I marvel at your strength. You have been fighting this disease for as long as I have been reading your blog. I’m sending you some gentle, non-PICC line side hugs, ‘cos everyone needs a hug.

    Oh and I’m betting on ‘gone’ too. You need a break, a 50+ year one.

    Lisa B
    Hampshire, UK

  20. whymommy says:

    The line is OUT!

  21. throwslikeagirl74 says:

    Ugh. So glad it’s out. 🙂 I had a PICC in my neck for my last surgery. Next time you need one, one of your knitting bloggy friends should make you the cover or just cut up an old tube sock to cover it. They are so hard with kids. 🙂

  22. ali says:

    http://moms.alltop.com/
    check this out. good stuff.

  23. I’m glad it is out. You are full of grace and courage and I pray, entirely empty of cancer cells. And we will celebrate at BlogHer.

  24. kandybolli says:

    evaporation signed new science

%d bloggers like this: