Access Denied!

For many cancer patients, an "access" is an essential part of the treatment plan.  Some chemo types, including Yondelis (the one I'm on), are classified as "vesicants" and, therefore, require some type of vascular access device.  This is necessary so that the chemo is released very close to the heart and quickly mixed into the bloodstream.  A regular IV will not suffice for such medications.  These devices are both necessary and lifesaving.

They can also be very problematic.  In the past 3 months, I've had to deal with the following challenges:

Port Infection 

This led to an ER visit in late August, followed by some strong antibiotics (which did not work), followed by a "stat" port removal on August 31 (due to the aggressive spread of the infection).  Here's a picture just minutes before the removal:

Aug 31: Infection on day of port removal

As I had discovered last July, there's something about Yondelis that tends to lead to more frequent port-a-cath infections.  But this infection was far worse than what I had 13 months prior and nothing I would want to repeat.

Chest Abscess

Removing the port should have been the end of the infection.  Things did improve initially, but within a week, a chest abscess had formed. This led to another ER visit, subsequent hospitalization, and lots of antibiotics:

Sept 5: Chest Abscess

PICC Line Placement (and ongoing maintenance)

With the port-a-cath removed and my infection finally cleared up, it was time to get a new access device.  Having been burned twice now with port infections, I figured I would try something new this time.  The choices were:

1. Chest mounted central venous catheter
2. Arm mounted PICC line

Both types are a royal pain to maintain!  First off, each "lumen" (my line has 3) needs to be flushed daily with a saline syringe and re-capped with a new green cap.  Oh, and good luck getting those caps since you can't get them from any pharmacy!  Secondly, that covering over the access is a very special dressing that needs to be changed weekly by a Registered Nurse.  So, if you're not able to get home healthcare, this means at least weekly trips to your infusion center to get that changed.  And, whatever you do, don't get it wet or sweaty, because that will require an immediate dressing change.

Sept 15: PICC Line (right arm)

Though the doctor encouraged the chest access, I opted for the one in the arm because it made showering easier and had the distinct advantage of not getting sweaty when I walked.  After all, how was I ever going to go on sweaty weekend walks if a chest access?

Though this reasoning seemed sound at the time, I found out later that there are some distinct disadvantages to having a PICC Line.

The Trouble with PICC Lines

I should have listened to my doctor and gone with the chest access.  And, frankly, he should have known better than to let me get a PICC Line.  I'm pretty sure he knows now, but I'd really prefer not to be the patient who, together, learns this important lesson.

Let me count problems with PICC lines:

1. Nobody "owns" it -- At Northside, if there are any issues with a port-a-cath or chest catheter, there's a doctor over in radiology that "owns" that device.  In contrast, the PICC line is installed by a team of experienced nurses and then handed over to the referring physician (my oncologist) for anything going forward.  Whatever issues or concerns that arise must largely be driven by the patient and their oncologist.  Neither I nor my oncologist was aware of this little fact.
2. PICC Lines can pull out -- When originally placed, the tip of the line was (purposely) very close to the heart.  With normal movement of the body and weekly dressing changes, however, the line can start pulling out, causing the tip to move.  The nurse told me that if it comes out by 2 cm or more, I would need to get a chest X-ray to verify the location of the tip.  Within 2 months, mine had already come out 2 cm!  Contrast this with the chest catheter, which is sewn into your skin to ensure it will not move.
3. PICC Lines can move within your body -- Since my line had visibly come out by 2 cm, I asked my oncologist to order an X-ray and have the tip placement verified.  The X-Ray showed that the tip was now about 4 cm from where it had been placed originally.  This means that, in addition to the visible 2 cm of movement outside of my body, the line had also moved 2 cm within my body!  Though a radiologist confirmed that the tip was still in a good place for chemo, it's horrifying to think that the tip can move without me having any indication of this outside of my body. This is something that really doesn't happen with either port-a-caths or chest catheters, likely because the line inside the body is much shorter and your chest does not move like your arm and shoulder do.  Why is this tip location so important?  The short answer is because vesicants can do some serious damage to your body if not quickly mixed into the bloodstream.
4. PICC Lines can cause blood clots -- This one is arguably the worst of them all as it can lead to life-threatening pulmonary embolism, stroke, even death.  Just between us, it would really suck to successfully fight cancer for years only to be taken by an unexpected complication, such as a blood clot or serious infection.

Blood Clot!

Things were were all "normal" with my PICC line, though on Friday, November 19, I noticed some unusual numbness and tingling from the top of my right shoulder to my hand.  I ignored this for much of the day, but as the afternoon wore on, I starting getting concerned.  At around 4:00 that afternoon, I made the decision to head to the ER.

Though many tests were performed, it was ultimately the ultrasound of my right arm that showed a clot on the PICC line itself.  I was never given any details as to the exact size or location of the clot; hopefully such details will be forthcoming.

I was given a dose of Lovenox (blood thinner) prior to my discharge that evening.

Lovenox Injection

I'm now self-injecting these "cute" little shots twice a day.

What comes next?

What does come next?  Is the PICC line going to be taken out?  If so, when?  How long will I need to be on blood thinners?  For how long will I need to worry about the life-threatening aspects of clots?  (Actually, I'm trying not to ask those "dark" questions, but they do cross my mind.)  What impact is this going to have on the trip to Key West that Holly and I have planned in less than 2 weeks from now?

So many questions.  Hopefully this week I will have answers to all of those questions.

Things are not all 'doom and gloom'

Now I normally am not one to complain, and that's honestly not my intention here.  Once again, I'm just trying to keep it all real here and share the unvarnished truth about life as a Stage IV cancer patient.  I had a new set of scans done back on October 4 and I'm happy to report that things are still "stable" with my tumor.  That is indeed great news.  Now if only I could get an access that works and won't kill me!

Isn't surviving the cancer supposed to be the "hard" part?  I still find it surprising that, months after a port infection, I'm still having all sorts of issues with my access.  Frankly,  I'm just sick and tired of having unexpected medical issues, having to run to the ER, and seeing what little free time I have consumed by medical "maintenance" for my access.

I remain optimistic though that, after I get over this one last hurdle and get a better access, things will turn around for me.  During this Thanksgiving season, I am so thankful for a successful cancer treatment plan and hope/pray that treatment will become easier with a better access.

Happy Thanksgiving to all!