The chemo port – and a new bit of hope

After spilling my heart out to you on Wednesday and tossing and turning for hours, I finally fell into sleep, only to be awakened by my little one and his fears (the scary trees outside his window) at 4 a.m.  A few hours later, my hubs woke me up in the boys’ room, where I’d accidentally fallen back to sleep while comforting Little Bear, and we headed down to the hospital for my chemo infusion.  We don’t tell the kids exactly where we go when we go to the hospital these days.  They know we go for an appointment, and they know I’m ill, and that’s enough for them right now.  Better we get them settled into school and deal with normal little-kid fears and transitions for now, and work the cancer stuff around their comfort with the new-teacher, new-friends shuffle first.

After my name is called at the cancer center, I’m ushered back to sit in the oversized chemo chairs, one per curtained area, each paired with a small, uncomfortable chair, where the patient’s support person can perch as she or he holds the patient’s hand.  The other hand is held still by the chemo nurse’s elbow while she punctures the vein — or vein after vein, as she tries to get a good stick, where the IV slides nicely into the patient’s vein and stays there, ready to deliver the chemo.  I’ve had some horrible times in that chair over the years.  Nurses have missed my vein, popped my veins, rolled my veins, and all kinds of ugly during the 6 months of chemo I had in 2007 and monthly or quarterly lab draws and tests since then.  The chemo I need now, however (Navelbine every 2 out of 3 weeks and Zometa every 3 or 4 weeks) doesn’t go through an IV.  I needed a port.

I have a port now, and I mentioned it before, but I don’t think I showed it to you.  Here’s what a medi-port or a port-a-cath looks like, in cartoon version, unfortunately, but if you’re strong of stomach, you can always google image search port-a-cath and see one planted in many different patients and survivors.  There are many strong smiles out there, and it’s actually rather impressive to see so many strong women and men (and children) voluntarily getting this port for chemo and its nasty side effects, all in effort to live a little longer.  It reminds me that I’m just one of so, so many cancer patients today.

So I have a port now, and on chemo days the nurse gloves up, wipes the bump on my chest clean, and pushes a device into me that will attach the tubes outside my body to the tube inside my body that winds from the port to the jugular vein in my neck.  There’s a cut on my neck from the surgery, and I hope it heals soon, because with most shirts the port and tube itself aren’t at all visible.

The device is called a needle assembly, and it looks like this from the patient’s perspective, with a 19 gauge needle coming out the bottom and into my skin.  It’s a beast to wear on chemo day, but it sure does make withdrawing blood for labs and accepting all the various IV medications and such easy.  The nurse says it will be less tender after a few more weeks.  I’m glad to hear that, because it’s been more than 24 hours after use and it’s still tender.  (I tried holding an icy diet coke can on it to calm down the tissue — it totally helped!)

Because the cancer is in my spine now and I’m so uncomfortable, when there’s space, I sometimes rank a bed in the chemo unit, which is nice, because it’s quiet and I can get my morning sleep in while I wait for the lab results and everything else to come back – once they come back normal (or normal-ish), then the order goes into the pharmacy and they begin to mix the chemo.  It takes another hour and a half after that before the infusion starts.  But my cancer center is a good one, and well-funded, and we each now have a small flat-screen tv and cable to entertain us with, as well as a decent wi-fi signal.  It’s a pleasant place to get chemo, and I don’t mind it nearly as much as I used to.  But it does make me tired.

I’m not sure where today’s post was going, really, but I wanted to show you the picture of my port-a-cath and needle assembly, because it freaked me out a LOT at first, but now it’s just a part of me, and I’m learning to get used to it.  Just please, don’t hug me too close on my left side for a while – there’s a new bump there, and it’s tender.

…

Oh, I remember now!  The new bit of hope.  When we met with my oncologist yesterday, it was the first I’d seen her since my hospital visit, and I was pretty groggy then as they fed me all that pain medication.  We talked the situation through again, and we have some new hope.  First, we added the Zometa infusion back to my treatment regimen, and this will help to build my bones.  It wasn’t a failure earlier this year; Zometa doesn’t help keep the cancer from growing at all.  What it does is strengthen the bones so that the effects of the cancer cells in the bones are lessened.  We’ll keep doing that, and hopefully it will work and my bones will get stronger.  Second, we made a medication change to help me with some side effects.  And third, when we asked her about the overwhelming fatigue, the tiredness that is impossible to overcome, and the exhaustion that sends me back to bed every three hours, she was able to help, and to give me some hope.

The fatigue may not be from the cancer destroying my bones.  The fatigue may be a side effect of the medications.  Both infusions have heavy fatigue as a side effect, as do both of my pain relieving medicines (opiates), and another pill that I take for anxiety and hot flashes, side effects of (very) early menopause.  The combination is almost a guarantee that I’ll be tired, but no one expected me to be this tired!  So I’m to rest when I need to (which is still a lot), but next week I’ll start a sixth medication that will counteract this side effect of the first five.  I’m not anxious to add medication, since I’d be an all-natural organic girl if I could, but at this point my body chemistry is anything but natural, and that is what is keeping me alive.  So, a sixth medication it is, and I can’t wait to be able to be awake for a whole afternoon!

To think that I may be able to reclaim an afternoon without sleep?  That would make everything more possible.

Wishing each of you a good weekend,

Susan