Port-a-Kath

That is me. I've done it. After eight or nine months with a PICC line, I gave up and asked for a Port-a-Cath. I found the dressing constantly itchy. We tried paper dressings and iodine, but still I scratched. The new PICC dressing became available, and it too caused itching. As much as I enjoyed the nurse's visits I was getting, I was done with the PICC.

I asked for it at my last oncology appointment, and within eight days I had the port in. Now it is the stitches that are itching! Is there no respite for me? A gripper, also known as mini-loc, is on place, with dressing over it for another week. It will come out after my Herceptin treatment next Friday.

I was not pleased to learn that the port can't be used for a CT scan, like a PICC can. So on Thursday I had an IV and a port put in and a PICC removed, only to have another IV put in on Friday for the CT. That plus the blood tests, makes for some bruising.

If you're keeping score, that is now three PICCs and two ports. Will this be the last? I told the doctor who inserted the port about the bruising and infection I had with the last port. He assured me those were unusual experiences and that it would be very unlikely for me to have trouble with the new port. Here's hoping it works for many years.

I'm Not Doing It, The Port That Is

Just a quick update, folks. After much thought, and discussions with nurses and my husband, I have decided not to go ahead with the insertion of the Port-a-Cath on Thursday.

The key factor for me was that my current treatment is oral Tamoxifen daily and infusions of Herceptin and Pamidronate every three weeks . These drugs don't damage the veins like chemo does. So I don't really need the port now. At some point, I should expect that this treatment will fail. Eventually I will have to go back on chemo. At that point, I will need either a port or a PICC. But I will wait until then.

For those of you who are deciding whether to get a PICC or a Port-a-Cath, here are the pros and cons as I see it. Please check with Dr. Google to learn about other aspects that I didn't experience:

Note: as soon as I hit "publish" I thought of more items for the list. They are marked with a "*".

Port-a-Cath

Pros

• Protects veins from chemo.
• Once the incision heals, you can shower and swim normally.

Cons

• Both inserting and removing the port require minor surgery. Healing from the port insertion feels like you've been kicked by a mule. I was aching and taped awkwardly, which made me walk like Igor from the old horror movies.
• *The port site is exactly where your child's head cuddles you. Seat belts and bra straps will also irritate the site.
• The port may erode the skin above it. In my case, I had persistent bruising at the port site (not normal) and later an infection.
• I could feel where the wire looped up my neck. It was a little painful. Definitely icky.
• In Ottawa, an appointment with a nurse is required to use the port for a blood test. If you want to leave the Gripper needle attached between the blood test and treatment, sterile dressing is required. So much for showering normally.
• If your port isn't accessed every four weeks, you need a nurse to come to flush it.
• The incisions (there are two of them) and the port site could form keloid scars. At the suggestion of my dermatologist, my doctors injected Kenalog (a type of cortisone) at the incision site to reduce the chance of keloids forming. It worked, so far.

PICC

Pros

• Protects veins from chemo.
• Painless accessing of the PICC for blood tests and IV medication.
• Removing the PICC is easy. They slowly pull it out. I watched; it was cool.

Cons

• You walk around with a bit of tubing sticking out of your arm the whole time. This is covered with sterile dressing. It is annoying in the summer. I had a weird tan that year.
• A nurse must come weekly to change the sterile dressing and flush the PICC line.
• You can't swim.
• To shower you have to wear a plastic sleeve to keep the dressing dry. Your arm never gets a good scrubbing.
• In Ottawa, an appointment with a nurse is required to use the port for a blood test.
• If you are sensitive to adhesive, like I am, you may need to use Mepore (paper dressing) to avoid irritation. I later changed to IV3000. My skin was fine while I had the PICC, but I had some scabs form after the PICC was removed and the dressing taken off for good.

No PICC or Port

Pros

• No holes in your body.
• You can swim and shower normally.
• You can walk in for blood tests either at the hospital or a local blood lab. No appointment necessary.

Cons

• Chemo can damage your veins.
• Blood tests and treatment will require a poke in the arm. If your veins are hard to find, as mine sometimes are, maybe two pokes. You may bruise at the site of the poke.

That is all I can think of. I hope these pros and cons will be helpful to someone that's just starting out with cancer treatment. I know I will come back to the list when I have to start chemo again.

Please add a comment with your experience with PICC lines and ports.

A Milestone: 20,000 Page Views

Wow! Sometime in the last couple of days, this blog has hit a milestone I never anticipated: 20,000 page views. This is something that merits celebration, and gratitude.

I started my cancer blog after a short career as a geaneablogger (about family history) mostly as a way to keep family and friends aware of how my treatment was going. I knew many were getting the info through my mom and their parents. I'm sure some details got lost in translation. It was also difficult to tell the whole story over and over. My blog gave me a chance to write it down, once and for all.

My secondary purpose for the blog was to raise awareness of breast cancer. For a while, I gave my readers a monthly reminder to "check your boobs!" I think I felt that I might have caught my cancer earlier if I had done regular self-examinations. Then, as I became more educated about breast cancer, I realized that self-exams and mammograms aren't the be all and end all for finding cancer. That's when I dropped the words "breast cancer awareness" from the blog's title and went for the straightforward "Kate Has Cancer."

I received some criticism for the change. Is it defeatist to call myself Kate Has Cancer on the blog and Twitter? No, it's realistic. Remember, I have Stage IV breast cancer. I have had advanced cancer since they found it. Chemo, radiation and the other therapies have shrunken my tumours -- you can't even feel the one in my breast -- but many of them are still there in my liver and bones. My blood tests are fine. so I figure, if my liver can live with these tumours, then so can I!

Over time, another purpose for my blogging has emerged. I hope that others with advanced breast cancer can find, in my blog, some peace, some information and some hope. I don't focus on the latest news from clinical oncology. I talk about my treatments and the resources available to me here in Ottawa. Judging by the Blogger Stats, my most popular post, with nearly 600 page views, is perhaps my most practical one, on PICC line covers. I hope my link to a crochet pattern helped someone with cancer or even someone who wanted to help someone with cancer. I've had 800 views of my About Kate page, which I imagine could use an update. Almost 400 read my early post about how I started onto this cancer roller-coaster. Around 300 read two of my glimpses into the terror of Stage IV cancer, Reflections on Recent Deaths and Someone Took the Monster Out of the Cupboard. I have seen my readership rise to, on average, 200 page views per post. I never expected this. I may be Italian, but I don`t have that many cousins!

That brings me to the grateful part. I thank you readers for continuing to read and support me. Your comments on the blog have given me new perspectives and great support. I also thank God that I'm still here to write! Every day, every post is a blessing. I must also express my appreciation to my fellow bloggers who have directed considerable traffic my way: Ann at Breast Cancer? But Doctor....I Hate Pink!, Nancy at Nancy's Point, Jenny at Putting the GRRRRR in Grimes, and Nancy at The Dirty Pink Underbelly.

I hope to be here many more years. And I hope you stick with me. Thanks for coming.

My PICC Line Made a Break for It

As I have explained in a previous post, I have a nurse come in every week to change the dressing on my PICC line.  Over time, I have noticed that the length of the line sticking out of my arm has gradually increased from 6 cm to about 7.5.  Yesterday, as the nurse was removing the old dressing, we both saw the PICC line jump out a bit.  When she measured the line, it was at 11 cm!  Time to call the hospital's PICC Team.

This morning the PICC Team called back and scheduled me for a 9:30 chest X-ray.  It showed that the line had indeed moved.  It was good enough to be used for my 10:30 chemotherapy today, but not good enough to keep using.  Once my chemo finished this afternoon, the nurse just pulled the line out.  My Sweetiepie had to move away for this -- it wasn't something he wanted to see.  I thought it was kinda cool.

Now I'm waiting for the hospital to schedule me for a reinsertion of the PICC line, since I still have a fair bit of chemo ahead of me.  In the meantime, I will enjoy the luxury of showering without a plastic sleeve.  That left arm is going to get a good, long scrubbing!

What Breast Cancer Looks Like: Lucia Alloggia

Geoff and I have often mentioned how wonderful our neighbours are.  We've focused on how kind and generous they are, but one, in particular, is also very talented. 
Let me introduce you to Lucia Alloggia.  In 2010, Lucia was diagnosed with breast cancer and underwent surgery, chemo and radiation.  On her website, her 2010 gallery is made up of four paintings chronicling her experience with breast cancer:  The Mastectomy; The PICC; Chemo; and Radiation.  They are fantastic paintings. 

Chemo is particularly touching.  With Lucia's permission, I will reproduce it here:

If you have had chemotherapy, even if it's gone well, you will recognize yourself in this picture.  To me, the slumped shoulders say it all.  Like they say, a picture tells a thousand words.

I encourage you to visit Lucia's website here.  In addition to the cancer series are many portraits, and paintings modelling the styles of the masters.  And did I mention that Lucia is as generous as she is talented?  You'll also see paintings she has donated to the restoration of an earthquake-damaged church in the Italian town of Camarda, where she is from.

I hope you enjoy her paintings as much as I do.  Lucia can be reached by email through the contact form on her website.

Chemo Update: January 6

I had chemotherapy again on Friday, January 6.  As usual, Geoff came with me, but this time two old friends visited as well... somewhat to the chagrin of my otherwise cheerful nurse.  We are really only to have one person accompanying us to our chemotherapy treatment.  I suppose that keeps the noise down for everyone else.

This session, I just received the Taxol, along with the drugs that are given with it.  One is a steroid and another is Benedryl.  The Benedryl is given right before the Taxol.  The result is that I get really sleepy pretty quickly.  I always bring books and puzzles to while away the time during chemo, but every time, I end up getting drowsy or falling completely to sleep and if you would believe it, later on, I get drowsy at home trying to re-read the same part of the book or trying to do the same puzzle.  Very frustrating.  I would think that this doesn't make me a very interesting person to visit, but my old friends didn't seem to mind -- as far as I could tell through my droopy eyelids.

All those drugs are given through the PICC line, which is convenient enough, except that it can interfere with my pain pump delivery.  During certain IV treatments, I have to disconnect the pain pump.  Given that I'm spending that time sitting quietly on a bed, it's not generally a problem that I'm not getting my pain medication.  But with all the saline they pump into me, I do generally have to make a couple of trips to the bathroom down the hall.  With luck, I can reconnect the pain pump and give myself a shot before dragging my bad leg down off the bed and down the hall.  If you're curious, I don't use the walker for these trips.  I have to bring the IV stack, as it's still infusing medication as I head to the bathroom.  So I just unplug the IV power pack from the wall and put my weight on the pole to make it to the bathroom and back.  Haven't had any trouble so far; I just don't look very graceful.

Friday's chemo session started at noon, so I had some lunch there in the hospital bed.  I packed a light lunch of celery and peanut butter, crackers and clementines, with a cup of milk. And a cookie too; it's Christmas.  I've been choosing the hospital bed over the chairs for chemo lately.  I like being able to change positions easily in the chair.  Plus they have convenient tables on either side for your stuff.  But with the swollen ankles I've got, I figure I am better off in the bed, where I can keep my feet up higher in the hope the swelling will lessen.

So, Friday's session was pretty routine at the hospital; the only change being my extra guests.  I wasn't as tired as last week, but I was unsure how I would feel in the evening.  We were invited to attend a friend's bonfire that night.  It sounded like a lot of fun, but I wasn't sure how accessible it would be for me in my current physical state and I wondered if I'd be exhausted like after the previous week's chemo.  So I let Geoff and Lena go with one of Lena's friends and I stayed on the couch at home.  Just as well.  I ended up with stomach cramps just after they left.  Nothing too bad or too long lasting, but I was uncomfortable for about a half an hour.  Geoff later assured me that the layout of his friend's bonfire would have been easy for me to access, so I hope to be able to attend the next one.

Overnight, I had more problems.  I woke up feeling hungry, I thought, but not quite wanting to eat.  And I'm not "authorised" to go down the stairs alone, so I just lay there in bed hoping the discomfort would pass.  It didn't really.  It became more of a stomach ache, even nausea.  I didn't like it a bit.

Eventually morning came and I took the Zofran pill the doctor recommended.  Zofran is one of the anti-nausea pills that is available to chemo patients.  My doctor had cut my dose from one or two for each of the five days from the start of chemo to only taking one dose the day of chemo and the following day.  My doctors tend to be of the "if you need it, take it; if you don't need it, don't" school.  As a result, and hoping for a better night, before going to bed Saturday I took another Zofran and I brought upstairs my bottle of Stematil, another anti-nausea medication that I'm prescribed on an as needed basis.  It turns out I didn't need the Stematil overnight, but I'm glad I had it at hand.  All I had was my usual sore back by 5am.  It's not easy to find 8-plus hours of comfortable sleep positions when you have a broken pelvis and several broken vertabrea.

Awareness note:  In addition to the Stematil pills that are prescribed to chemo patients, we are also given vials of injectable Stematil which we can call the community/home-care nurses to come and inject anytime if we find we can't keep anything down.  It really is comforting to know that the system is working to take care of us from all these angles, day and night.

Patterns for PICC Line Covers

One of my friends does a lot of needlework for charity. I should have expected that soon after posting my blog on my PICC line that she would find a pattern for attractive, durable PICC line covers.  Thanks, M!

If you're looking to make a knit or crochet PICC line cover for yourself, a loved one or to donate, check out these patterns and see how they work:

• The Finding Jenn Project -- this blog post includes both a crochet and a knit pattern, for children and adults.
• http://lauriedolan.blogspot.com/2009/03/finding-jenn-project-crocheted-picc.html -- the children's and adults' crochet patterns.

The Finding Jenn Project is focussed on helping people with Cystic Fibrosis.  I'm guessing that just about any children's hospital or cancer centre would be pleased to receive donations of PICC line covers.

What is that bump on her arm? The PICC Line

If you have seen me since the end of October, you may have noticed a bandage on my upper left arm or maybe you saw a bump under my sleeve.  What's up with that?  It is a PICC line, or a peripherally inserted central catheter.  Essentially, it is an intravenous access to my superior vena cava.  What it looks like is an IV tube sticking out of my arm, with a bandage behind it.  I like to think it makes me look a little like Seven of Nine, but maybe not.

By the time I first saw the medical oncologist back in October, my arms were black and blue from all the blood tests I'd had.  The technicians were having a really hard time getting at my veins.  Sometimes two, three or four attempts were needed before they could get the blood they needed.  Meanwhile, blood was pooling under my skin and the bruises were lasting up to a month.  That didn't bode well for chemotherapy.

But there are options for chemo, since they expect our veins to get a rough workout.  Sometimes a Port-a-Cath is used.  In that case, a device is implanted below the skin near the collarbone and injections are made directly through or into it.  The Port-a-Cath has the advantage of being totally sealed, so bathing and even swimming are no problem.  Unfortunately, I develop keloid scars, which could easily be triggered either by the implanting of the devise or by the repeated injections into it.  I didn't want to take that chance, so chose to go with the PICC line. 

The PICC line involves a single injection in hospital, followed by a chest X-ray to ensure the line is in the proper place.  There was no pain at all involved in the installation of the PICC line and I don't feel it all (a very, very few people do feel it).

PICC line care is fairly straightforward.  I need to keep the dressing dry, so I have bought a bunch of plastic sleeves at the hospital to wear during showers.  The dressing also needs to be changed weekly.  A home-care nurse comes every Friday to change it.

No more injections, no more bruises.  The nurses use my PICC line for everything now.  The chemotherapy IV is connected to the PICC.  My blood tests, required a day or two before every chemo session, are also taken through the PICC line.  My pain pump, which was originally installed in another part of my arm subcutaneously, is now connected to the PICC line, which I am told works more effectively.  And when I was in the hospital in November, they used the PICC line for my IV fluids, antibiotics, blood transfusion, and other medication.

One time that I was at the Cancer Centre for blood tests, I was given a fabric PICC line cover that volunteers had provided.  It was made of a subtly patterned white material.  It dresses up the PICC line a bit compared to the hospital's usual elastic bandage.  Geoff and I were thinking, however, that it would be easy enough to make up a bunch of fabric PICC line covers in a variety of attractive colours and patterns.  I even bought some yarn with the intention of crocheting a black cover.  Black goes with everything, of course.

Apparently, the PICC line can be left in place for as long as a year.  If that saves me the poking and prodding and bruises of the average blood test, I'm happy to have it!