When life gets too complicated to write it all down…my chemoport chronicles

Well, the commitment I made to myself at the beginning of 2012 to be more diligent and regular about posting has just seen its first #fail, a five week long hiatus. Oops.

My distractions started with a blood infection I came home with from MSKCC in December, 2011. Five weeks with a PICC line that needed daily dosing for the first two weeks of December, followed by daily flushing until it was mercifully removed on Jan. 6, 2012, only managed to affirm for me that I simply HATE working on my own wounds.The PICC line was visible evidence, every single day, that I’m a cancer patient – the first publicly visible evidence in eight years of treatment. I hated it.

Yeah I know how to care for a PICC, and how to dress wounds – that doesn’t mean I should or I want to care for my own. Remember, I’m the one who passes out when I watch needles being placed into my own arm, or my own blood draws. It matters not that I can put an IV into any creature, get blood from a stone. Stop asking me to manage my own wound care and line flushes. I’m asking nice…

So, on Jan. 6, an interventional radiologist at one of the local hospitals removed my hated PICC line and implanted a replacement port in my right chest. And from the beginning, it kinda didn’t feel right. But I told myself that my original port, which had been placed by a surgeon in 2004, had been much deeper and that it had hurt for awhile, too.

And then, the Thursday before Super Bowl, I was getting cleaned up to go out to lunch with friends. I looked down, and in my right chest – the area which I can’t see clearly because I’m so near-sighted and because I had drops in my eyes to heal the Erbitux irritation, I noticed something weird and moving in the incision. It was a gap, about the size of a pencil eraser – through which I could see the hard white plastic of my brand new port.

“Oh, don’t worry about it,” said the interventional radiology PA. “That happens sometimes. Just come in this afternoon (no hurry!) and we’ll glue it back together.”

Ok. Deep breath. Cancel my lunch, traipse up to the hospital. Get steri-stripped back together, and then manage to catch my sister who is going for an MRI. Go home. Baby the right shoulder, try to avoid stretching, go back to sponge baths as ordered to give the steri-strips time to fall off on their own.

Super Bowl Sunday comes. Again, I’m getting dressed to go over to my brother’s house. I look down as the steri-strips fall off. Oh by the goddess…the stupid incision is OPEN again, in what looks like the same place.

But I’m am NOT going to an ER on Super Bowl Sunday. I have worked as a medic on Super Bowl Sunday. No way – the ER will be a madhouse. So, I put a 10x magnifying mirror on the vanity, kneel down so that I can see the wound clearly, remove the last straggling steri-strip, disinfect the area, and butterfly the thing together. Slap a 2×2 gauze and paper tape over it. Baby the shoulder all night, and call the interventional radiology PA Monday morning.

“Okay, come on in again. I’ll talk to the surgeon this time.”

Sure. Terrific. This time, she used actually wound glue AND steri-strips. On Wednesday, the chemo nurse manages to hit the port and not disturb the bandage. But the following Wednesday, my NP Kathy takes one look at the bandage-free incision and says, “It’s open again.” She calls my onc, Jeff, who says, “Let’s get her to a surgeon. We can’t take the chance it will get infected; it has to come out.”

So on Thursday, Feb. 16, Dr. C took out port #2, under local anesthetic in his office. I warned him that I’ve become quite a wuss and I might cry. He assured me that he might cry, too, and then proceeded to talk and joke me through the thing with minimal pain (except for the shots of anesthetic.) On Tuesday, Feb. 21, his partner Dr. H put in port #3, again on my right side but this time higher (over my collar bone.) And this one has hurt a bit more, but at least it’s a tad deeper, and I’m not worried that it’s gonna fall out.

But first, he tried my left side, and didn’t like the veins he found there. So I have a steri-stripped incision under my left collarbone, a steri-stripped incision over my right collarbone, and the 1 1/2″ open wound where my port #2 was removed. And I’m terrified that it will:

  • get infected
  • not heal
  • heal as a huge gash, since my skin doesn’t cover the hole

The dumb thing is, the blood infection took a heckuva lot out of me, far more than I’d have ever thought. The first weekend of November, 2011, I was walking all over the Spanish Harlem neighborhood where I’d rented an apartment for my three-month checkup in NYC. I took the subway downtown to my scan at the hospital. I had a great weekend watching the NYC marathon.

Dec. 7 when I limped home after the RFA, lung collapse and two weeks of in-hospital treatment for my hospital-acquired sepsis, I was literally weak as a kitten when I got out of the cab at Penn Station, headed home. When I got back to Syracuse, I didn’t even pick up Madi from Camp Jill until the weekend. No way was I strong enough to drive to Waterville to pick up Churro the cat, who ended up staying at the Animal Resort until the end of January. And even after I picked up Madi, I stopped walking her, exercised her on a flexi and a tie-out. I even bought a cane, because I kept wobbling when I walked.

In November, I’d been completely off all pain meds, including OTC Ibuprofen, for about a month. By the time I left the hospital, I was back on 3x/daily Ibuprofen plus Oxycodone three times per day. I was off chemo altogether for 8 weeks before I could get the new port placed.

What this little escapade confirmed was my theory that some part of my Erbitux/5FU cocktail with a side of Xgeva shot each month was keeping the bone pain in my lower back and hips under control. Why? Because as soon as we restarted chemo on Jan. 11, within 36 hours of my dose I was able to drop the oxycodone completely. It also confirmed that my immune system is weakening, and it is harder for me to come back after procedures or infections.

Somewhere around the beginning of February, I started to feel human again – so human that I took on another foster greyhound and have been able to take daily walks with both Madi and Slam. I feel like I’ll actually be able to walk all the way around the halls of Congress next week when I go to lobby in FightCRC’s Call on Congress. I may need some extra Ibuprofen, but I don’t think I’ll need the oxycodone (although I’ll bring some, just in case.)

For the last few weeks, life has been coming at me too fast to write things down. Finally, I feel like I can breathe, and fulfill that “Hey 2012, bring it on” challenge I issued earlier this year. And note to 2012 – please do not construe that challenge as a request for more turmoil. Just sayin’.

Now I just need to pack. ;)

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  1. azahar says:

    Okay, I am going to stop complaining about my monthly chemo port cleanings. Well, maybe.

    Good grief that’s a lot of grief over a port. Let’s hope it’s in properly in place now. Very glad to hear you’re feeling stronger. Any trips to Spain in the works…?

  2. Susan F. LaGrande says:

    Good Morning~! Thanks for feed back with regards to article about St. Elizabeth Hospital here in Utica New York.I checked out and joined your blog, and web-site. Beautiful photo on front. I have to start adding more of them to my articles. I hope you are well, and enjoying life. Its funny you mentioned Ap style. As a new student teo of my professors this year require APA style for essays. I had to download program to format. LOL I am used to MLA. Anyway have a great day be well…

  3. Wow. You have really been through it! Hope things start going a little smoother for ya!

  4. Odette says:

    You are strong… I go to Van Duyn almost every day, that’s pretty close to you. I can stop for a visit anytime you feel like having company or need ANYTHING.