Education of a Caregiver: Kidney Cancer, IL-2 and Facing the Monster Together

by Nancy Hoey, caregiver on March 20, 2011

Editor’s Note: The following blog is an ongoing series, titled “The Education of a Caregiver,” written by Nancy Hoey, caregiver to Mike Hoey, a Stage IV metastatic Kidney Cancer survivor.

We had finally made the decision to go to Riverside, California so that Mike could start the HD IL-2 treatments. Riverside is a good 500 miles south of our home in Northern California so this meant going through this treatment without our “base” – without our family and our friends to help us get through it.   It was about two days before we were to report in and I could tell that Mike was starting to get scared – so many unknowns.  I was scared too because I knew what I thought was too much at the time and I didn’t think we could singly, or as a couple, endure or survive what loomed be in our future.

At that time, I remember comparing this decision to take the HD IL-2 treatments as if we’d won a “Mystery Trip” on a television game show.  We’d been told that the trip would be different than anything we’d ever done before and the destination (outcome) would be kept secret.  All we knew was that it was going to be exotic, dangerous and it would take us a long time to get there.   We knew that there was just a little bit of insanity in our decision to take this trip in the first place.  We knew others had taken this trip and survived but they seemed reluctant to share any of the details with us.  This was never a trip that we were all that anxious to take, but now that it was here and in front of us we decided we would go and make it be the best it could be.

So we boarded our “flight” and we tried to turn the fear into anticipation and everything appeared to be in order when we were cleared for takeoff.  We quickly reached our cruising altitude which was up above the clouds.  We couldn’t see the ground; we couldn’t see past the clouds, but we knew the ground was still there.   At least we hope it is.  The flight is surprisingly calm at first and it makes you feel reassured and you even find yourself exhaling and thinking “This isn’t so bad.  What was I so worried about?”

And then, without any warning, without any bells or an announcement to return to your seats and fasten your seat belt  — there is that little “bumpity-bump.” Anyone who has ever flown knows what that feels like.  It’s just a bump and then another one, so close together it could almost be interpreted as one bump.  It’s harmless right?  It happens all the time, right?  Or is it more than that this time?  Are we going to stop at the two little bumps or will there be more?  You still can’t see beyond the clouds but you know the ground is still there and you are expecting – you are counting on – landing on a safe runway.

And then, suddenly, there is an announcement over the plane’s intercom.  The voice says that it appears we are not going to have a safe and smooth landing after all.  In fact, it appears that we aren’t going to have a safe or smooth re-entry and it won’t be a smooth touchdown.  In fact, you might not even land at all!  What?  What did he say?  There’s no turbulence, nothing that tells you that you may be in mortal danger.  You are still floating up there above the clouds and there is still a lot of time left before our trip is over.  It had to be a mistake.  They must be talking about some other flight – not this one!  You somehow manage to put it out of your mind and try to enjoy the flight you are on because it is definitely not the flight that is in trouble.  It can’t be.  And then another announcement – the one that tells you to buckle up and prepared for a terrifying re-entry.  You suddenly realize that you hadn’t been listening when the flight attendants gave you the safety information that you so desperately need now.  Where are the exits?  Where is that lighted footpath to follow if the cabin fills with smoke?  Where are the floatation devices?  How do I put on the oxygen mask?  He’s looking at me to see if I’ve been listening.  Have I been asking the right questions?  What were the answers?  Am I sure I heard right?  What about that exit behind us?  Is it closer than the one in front of us?  Can’t we just turn around and go back – go back to where this flight started?  I never wanted to take this trip in the first place!  Let’s go home.

At that time, Mike and I were both more terrified of the three weeks that lay in front of us than we had been about anything we’d ever experienced before.  I thought about being 24 years old and standing at the altar in front of our family and friends and promising to love him and honor him “until death us do part”.  At 24, you don’t even realize what that means.  Then you get busy with careers and making a life.  You think about buying a house and having babies and a quick spattering of fairy dust and your wishes have been granted.  You’ve been blessed with two wonderful children and before you know it, those precious babies are growing up and you’re watching them play soccer or crossing the bridge from Brownies to Girl Scouts or graduate from college or step into the uniform of the United States Army.  They’ve turned out to be great kids and you couldn’t be more proud.  You want life to treat them better than it’s treated you, keeping in mind that you’ve had a pretty terrific life so far and nothing to complain about and not much you’d do differently.

Then one magical day, your first grandchild arrives and you just can’t imagine a more perfect world than this.  This precious, innocent and incredible little person that you get to share and enjoy and help nurture and love more than anything in the world becomes your world.  I have a saying what was the nursery here in our home (it’s now the Princess Playroom) that says:  “Dearer than our children are the children of our children.”   I felt that so completely with our first granddaughter, Eleece and later with Kendall, Taylor and A.J.  As much as I thought I could never love anything more than I have loved my own children, these little people have captured more love than I thought I could give.  We start thinking that maybe next year, Mike will retire and when they’re a little older, we’ll go on a Disney cruise or we’ll take her to the ocean or buy them a pony or whatever.

We start thinking about a motorhome and repeating our trip across the United States.  We want to go to New Zealand and Tahiti and stay in one of those “end of the horizon bungalow’s” that I’ve had so many clients rave about.  And just when we get to that point where we feel safe and comfortable, the kids are grown with children of their own, the house is paid for and money isn’t a concern, we felt like sitting back and saying “Life is great.  We’ve got it made.”

Then suddenly, there is a knock at the door and waiting on the other side of the door is a monster.  It’s a huge horrible beast of indescribable proportions who is going to change everything.  At first, you think you can stop it.  Quick, grab a chair and hit it. Shoot it.  Stab it.  Throw acid on it.  Do something.  You can knock it out, you can kill it.  You can bury it in the backyard and no one will ever know it came to your door.  And then you realize it can’t be stopped and all the hopes and dreams and all the things you thought you were going to be able to do are now in horrible, horrible jeopardy.   Why?  Why us?  Why now?

When Mike took the 32 doses of HD IL-2 back in 2004, it was given in Riverside, California.  We live in Sacramento which is about 500 miles north of Riverside so for us, we were journeying not only into unknown physical and medical territory but we went without our loyal and wonderful support group of family and friends. At the hospital, I would stay by Mike’s bed from about 8 a.m. until 10 p.m. each day and then I would find a security guard who would walk me to my car and I’d go back to the motel to get some sleep, get up and take a shower and do it all over again the next day.   At that time, we had no idea what to expect from the HD IL-2 treatments and we didn’t know anyone else who’d gone through it who could help guide us. We were so uninformed and so lost.  It was like being on that mystery flight again.   One of the ICU nurses suggested we read a website of a former HD IL-2 patient if we wanted to get an idea what kind of ride we were in for.  After reading just a few paragraphs, I knew that I didn’t want to read another word and I also knew I could never let Mike read any of it.  It was absolutely terrifying.  This patient told about his out of body experiences and how he’d repeatedly pulled the main line out of his neck and had to be restrained because he was hitting any personnel who ventured into his room.  With that as my only source of “information” as to what we might expect, I told Mike that if we got through this, we would make a point of helping others who were about to go through it.

At one point in his treatment, I think it was just before the 9th or 10th dose in round one, I unfortunately said out loud “This isn’t nearly as bad as I thought it would be.  You aren’t having any of the side effects we’d heard about and other than being tired and a little agitated, this is doable.”  Well, it was like every one of those side effects had been standing just outside the door and they took my announcement as an invitation to arrive – not singly – but in mass.  Poor Mike.  Every imaginable side effect and some that had never happened before hit him like a ton of bricks.

We talked to Mike’s doctor in Riverside when the treatments were over and asked if we could, in the future, be put in contact with people who would be going through the HD IL-2 treatments in the hopes that we could answer questions and hopefully make it a little less scary and take out some of the unknowns for them.  Since then, we have probably counseled at least 20-25 other “couples” who were about to take this journey.  We wanted to “pay it forward” so to speak and wanted to make the unknown a little less scary for them.  I think we have succeeded.  We are still in touch with many of the people we met through this journey, although sadly, there are more surviving spouses now than couples.  But even though not everyone achieved the results we all hope for when HD IL-2 is on the table, we have made some amazing friends along the way and we’ve formed bonds that will be with us forever.

3 Responses to “Education of a Caregiver: Kidney Cancer, IL-2 and Facing the Monster Together”

  1. March 20, 2011 at 9:32 pm, brenda said:

    i found your “story” very interesting and it brought back ( not they have ever left my head in 10 + years)my memories of my hubby’s time on LD IL2 . I think the side effects may be very similar and horrible. I would give him the shots i think there were 2 on IL day…and then about 2 hrs later we would go upstairs and he would get in bed waiting for the SHAKES,HIGH TEMP, hallucinations, nauseas and voimting to start .. I would tell myself in abaout 60-90 mins it woud be over and he would be peacefully asleep….and hopefully that nasty beast had been knocked down some more….He lost aboaut 40-50 lbs in the first round ( honestlyl cannot remember how many weeks that was now) so they had to change his dose, and over the course of the next 3 yrs “we” were on several different clinical trials… Saddly none of them ever conquered the beast…and my hubby died after about 3 years of putting in a good hard fight…. That was 10 1/2 years ago… Hopefully treatments have improved life expectancy since… Best of luck to you and your husband….Keep up the fight and like you said it is always an “US” trip even tho the one getting the actuall treatment gets hits harder physically, the caregiver get hits hard also metally and emotionall….


  2. June 13, 2011 at 2:39 pm, John Neary said:

    I have currently completed my first round of treatment and am waiting for the results to know what next steps are. I would love to talk to you about your experiences from this point on.


    John Neary


  3. March 03, 2012 at 1:23 am, Cynthia Veronda said:

    My husband just finished 10 doses of IL-2 for the first week of his treatment. It started out slow and then, turned rough. He was so sick with chills, the medicine made him sick, and then, the fever. For about 36 hours, I watched him and prayed to get through it. He was not allowed the last two doses, due to labs that indicated trauma to his body. However, now 24+ hours later, he is feeling so much better; eating, labs are rebalancing, and we will go home, tomorrow. Of course, we will return for the second week, in nine days.
    I am curious, did your husband respond to IL-2 and is he celebrating a “full or long-term remission”?


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