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A Fog of Feeling

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An onshore flow is washing over the Puget Sound this morning. The mocha-thick fog smells of shoreline and decaying leaves.  Fall is wafting in, and it soon will be dark when I get up at 7 AM.

If you detect a bit of melancholy in my words, you’re right. My emotions are foggy.  It’s been a week of highs and lows.

Yes, the highs outnumbered the lows. Friend and lung cancer advocate Tori Tomalia (who has the same type and stage of lung cancer as me) gave an inspiring and moving speech at a lung cancer event.  Someone found my blog by googling “wonderful late stage cancer blogs.”  A Facebook friend said my Stanford Medicine X speech on lung cancer stigma changed her life.  And a new lung cancer drug received Breakthrough designation by the FDA for those with ALK-positive non-small cell LC.

But the down came late, and hard: another stage IV lung cancer patient with my genomic mutation (ROS1) died yesterday.  Burton, a Harvard grad, was only 26.  He didn’t even have time to marry his fiancée, Emily (who’s been blogging about Burton’s lung cancer since April).

Being part of lung cancer community that includes advanced and late stage patients means the community, however educated and motivated, will lose members. I’m almost numb to it by now.  But I still feel something, even when the lost member is someone I’ve known only through Emily’s “ros1positive” blog.

For no logical reason, Burton’s death also makes me a bit anxious about my monthly blood work tomorrow. I’ve had so many blood draws over the past 3 years that I don’t really think about them.  But now, for the first time, I’m wondering if the blood draw will hurt, or if the nurse will even be able to draw my blood.  Last month my power port was seriously misbehaving, so I had to have the PET scan tracer and CT contrast injected into a vein on the flat inside of my left arm.  The tracer injection was fine, but the pressured injection of contrast HURT.  By the next day, I had a lumpy blood vessel at the injection site, and skin around the vein was angry red.  A month later, that section of vein is more black than blue.

My port is misbehaving on most scan days now, and the fibrin sheath I’ve grown over the tip of my power port’s catheter is getting tougher and tougher to remove. It may be time to have my port replaced.  Yes, it’s only minor surgery, but it means losing a day to the anesthetic  and accepting considerable discomfort around the surgery site for a week or so.

Being good at growing a fibrin sheath is not a useful skill. I wish I could grow something over my emotions when yet another friend who has lung cancer dies.

Any port in a scan

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I’ve had a Bard power port in my upper left chest almost 30 months, since December 2011.  This consists of a small titanium reservoir with a layer of silicone under my skin, connected to a catheter than runs into a vein near my heart.  I originally had it implanted so chemo could be administered through the port, sparing my veins.  While I don’t need it right now to receive treatment–I take my targeted therapy as a pill–the port is accessed every month for my clinical trial blood draws, and every other month to administer contrast and the FDG tracer for my PET-CT scans.

Ports are really convenient.  I don’t have to get poked every month, I can shower and exercise with it (unlike my former PICC line), and after so many months, the scar from the implant surgery isn’t even noticeable.  All that’s visible are three tiny bumps on a slightly raised, faintly bluish area under the skin. The only accommodation it requires is a small pad between it and my seatbelt when driving.  I’ve heard of people keeping a port for several years.

Here’s the hitch.  My port has misbehaved fairly often since it was implanted. I am apparently very good at growing a fibrin sheath over my port’s catheter. When a sufficiently long fibrin sheath , similar to the stuff in blood clots, forms over the catheter, it’s impossible to draw blood–the suction from the blood draw pulls the loose flap of the sheath over the tip of the catheter and closes it off.  The problem seems to be worse if I’m dehydrated.

To keep the port accessible, it gets flushed with drano on average every 1.5 months. No, not Drano the household chemical.  Drano is my not-so-affectionate name for TPA (sometimes called Cathflo), a chemical which dissolves the fibrin sheath and clears the catheter. Typically, a small amount of TPA (just enough to fill the catheter but not go into the bloodstream) is injected and left in the catheter for about 30 minutes, then withdrawn.  Usually this clears the port, although sometimes I’ve had the stuff left in overnight to clear a particularly persistent blockage–one interventional radiology xray showed I had a sheath about two inches long at the tip of my catheter. Well, everybody needs a skillset.

The fibrin sheath also sucks up the FDG tracer used for PET scans, so I often have a very bright spot on my scan right at the tip of my catheter.  The radiologist can see the catheter in the associated CT scan, so he knows that hot spot is just the fibrin sheath, but sometimes I wonder if that spot could overshadow a tiny cancer nearby.

I’ve considered having the port removed surgically and just tolereating the monthly needle pokes for my labs and scans, but to be honest, my veins aren’t very cooperative nowadays either. I’m going to keep the port in as long as the drano can keep it functional.  I just plan to drink a few quarts of water the day before it’s used so I’m well hydrated, and show up early for lab work in case my port needs a dose of drano.

My monthly labs today required more than the usual amount of blood. However, my port worked perfectly! I felt like celebrating, so I ordered a grande soy mocha at the clinic’s coffee stand.

I forgot to say “half-decaf.”

I expect to get an amazing amount of work done this morning and early afternoon. Just don’t expect much from me after 3 PM.