Tuesday, June 24, 2008

A Day (or three) in the Life of Power Port Phil

Today Phil goes in for another infusion (the term used for intravenous drug therapy - chemotherapy in his case). For a while we thought this would be his last one. At his last appointment, two weeks ago, the Nurse Practitioner (NP) told him that she thought that the Oncologist wanted him to have chemo through August. It was upsetting news and frustrating to say the least. He asked her to check with the Oncologist (who is on maternity leave until mid-July). Imagine his complete frustration and just utter blah when the NP called and said that she'd discussed things with the Oncologist and actually she wants him to have chemo through October! OCTOBER???? Not the news we were hoping for. Of course they say, "it is ultimately up to you." I read in one medical journal that a patient who was having this type of chemo (preventative or adjuvant*) said, "so you want me to go through that hell to hopefully destroy cancer cells that you aren't sure are there and then when you are done you won't be able to tell me if it worked?" Phil says that is exactly how he feels.

So, today is not his last treatment. I thought it might be interesting to describe a bit of how this all works. I don't intend for it to be whiney but lets face it, you aren't going to come away from reading this and think, "wow, that Phil, what a lucky guy to get to do that every two weeks!" And with that warning, I will now proceed to describe what Phil will experience today (and the next two days).

He gets up at around 5:30 a.m. and showers (enjoying his last shower for three days), gets ready, eats (enjoying his last real meal for three or four days), and drives about 90 minutes to University of AL-B'ham.  He checks in. Then he waits.  He sits in a large room of other chemotherapy patients and their families.  The television is ALWAYS on the station that carries Tyra and all those court shows (like Judge Judy, et al). Not the most engaging programming.  In the air is the sickening smell of stale coffee (because they have free coffee for everyone who is waiting).  Finally after waiting for a while a nurse calls him back and they take samples of his blood so that they can make sure he is healthy enough for them to make him sick.  They test his white count and every-other-time his CEA. The blood is drawn through his Power Port so at least he doesn't have to be stuck.  When that is done, he returns to the waiting room and he waits.

Eventually he is called back to the infusion room and given either a chair or a bed (like a hospital bed) and his nurse begins the infusion.  He starts with decadron (a steroid meant to help him deal with the chemo).  Then they give him avastin (another drug that isn't chemo but runs interference so that the chemo doesn't do too much damage to healthy cells).  It has now been about an hour and a half since he's been in the chair.  The next drug is oxaliplatin (the platinum-based drug that does lots of damage to his tongue, his feet, and nose). After about two hours of the oxaliplatin, his pump is delivered along with the drug cocktail referred to as 5FU (this is the one that makes him nauseated). When that is all set up, he puts the pump in his fanny pack and drives home.  Once a month he also has an appointment with the Oncologist - I usually go with him on those weeks.

The smells of stale coffee, alcohol, and that distinctive-yet-unknown smell of hospitals are enough to make anyone nauseated.  Imagine someone who has poison being pumped into him and has made the emotional/psychological/physical association with being sick.  Yeah, he hates it.  He also hates all the waiting (even though he can take his laptop and do some work).

By the time he gets home his skin will be the color of radioactive yellow.  It is a hard color to describe but it is truly not a natural looking color. At first it really freaked me out.  By tomorrow he will have traded the yellow for pink (a color that I enjoy much better).

He'll spend the next three days taking three different anti-nausea medicines which won't completely do the job.  He will have to avoid all food and drink that is colder than room temperature.  He also will need to avoid touching anything colder than room temperature (oven mitts become refrigerator mitts). Increasingly, he will run out of the energy to hold and then to interact with Eden.  This is hard for him - they are great buds and adore each other. He will feel guilty because he thinks these weeks are hard on me emotionally and physically (and he won't be entirely wrong but I hate that he would feel guilty about it - I know he wouldn't have chosen this!).  He will lose between 5 and 10 pounds. 

He will have the pump and tubing of 5FU hooked up until I remove it all (including the needle!) 46 hours after the 5FU was started.  The pump will sound an alarm and we will go into the bathroom-turned-into-a-hospital-room and I will flush his line and remove the needle.  The Power Port really is pretty slick.  I'm grateful that we don't have to deal with blood.

After he gets unhooked he will spend the next two days trying to get his appetite back, hoping he's able to hold food down, and regaining his energy.  We both try hard not to think about the fact that he only has 10 days (at that point) until he gets to do it again.

We are grateful to live in a time when there are diagnostics and therapies available for cancer. We are especially grateful to live in a time when the priesthood has been restored and that the blessings of the priesthood power are available. Truly, we have both been very blessed in many ways throughout this ordeal.

...even so, cancer stinks!

*It takes approximately one million cancer cells to make a growth large enough to detect. Therefore the fact that there is no detectable cancer means he has less than a million cells - he could still have thousands. Therefore they do this adjuvant treatment in order to, we hope, reduce or destroy those cells that still may or may not exist in his body.

3 response(s):

Claire said...

Wow. You guys are amazing! I'm sure this takes a huge toll on both of you. You are in our thoughts and prayers!

Alisha said...

Yuck! Hope this go around is an "easier" one, whatever that means.

Anonymous said...

Phil & Heidi,
I have complete empathy for both of you, having lost my husband to melanoma 11 years ago. My best friend was in stage IV and after many days and weeks like you described, she is cancer free. I know God is with you every step of the way and you will get through this. My prayers are with you.
Lois Madsen, Mike Bearden's Mom