{"id":987,"date":"2011-03-20T15:18:36","date_gmt":"2011-03-20T15:18:36","guid":{"rendered":"http:\/\/www.ackc.org\/?p=987"},"modified":"2011-03-20T15:18:36","modified_gmt":"2011-03-20T15:18:36","slug":"education-of-a-caregiver-kidney-cancer-interleukinfacing-the-monster-together","status":"publish","type":"post","link":"https:\/\/www.ackc.org\/jayedit\/education-of-a-caregiver-kidney-cancer-interleukinfacing-the-monster-together\/","title":{"rendered":"Education of a Caregiver: Kidney Cancer, IL-2 and Facing the Monster Together"},"content":{"rendered":"<p><strong>Editor\u2019s Note:<\/strong> The following blog is an ongoing series, titled \u201cThe  Education of a Caregiver,\u201d written by Nancy Hoey, caregiver to Mike  Hoey, a Stage IV metastatic Kidney Cancer survivor.<\/p>\n<ul>\n<li>Installment One: <a title=\"Nancy Hoey introduction to caregiving\" href=\"..\/blog\/the-importance-of-being-your-own-advocate-in-fighting-cancer\/\" target=\"_self\">The Importance of Being Your Own Advocate in Fighting Cancer<\/a><\/li>\n<li>Installment Two: <a title=\"caregiver kidney cancer\" href=\"http:\/\/www.ackc.org\/blog\/the-education-of-a-caregiver-an-introduction-to-caregiving\/\" target=\"_blank\">An Introduction to Caregiving<\/a><\/li>\n<\/ul>\n<p>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 \u201cbase\u201d \u2013 without our family and our friends to help us get through it.\u00a0\u00a0 It was about two days before we were to report in and I could tell that Mike was starting to get scared \u2013 so many unknowns.\u00a0 I was scared too because I knew what I thought was too much at the time and I didn\u2019t think we could singly, or as a couple, endure or survive what loomed be in our future.<\/p>\n<p>At that time, I remember comparing this decision to take the HD IL-2 treatments as if we\u2019d won a \u201cMystery Trip\u201d on a television game show.\u00a0 We\u2019d been told that the trip would be different than anything we\u2019d ever done before and the destination (outcome) would be kept secret.\u00a0 All we knew was that it was going to be exotic, dangerous and it would take us a long time to get there.\u00a0 \u00a0We knew that there was just a little bit of insanity in our decision to take this trip in the first place.\u00a0 We knew others had taken this trip and survived but they seemed reluctant to share any of the details with us.\u00a0 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.<\/p>\n<p>So we boarded our \u201cflight\u201d and we tried to turn the fear into anticipation and everything appeared to be in order when we were cleared for takeoff.\u00a0 We quickly reached our cruising altitude which was up above the clouds.\u00a0 We couldn\u2019t see the ground; we couldn\u2019t see past the clouds, but we knew the ground was still there.\u00a0\u00a0 At least we hope it is.\u00a0 The flight is surprisingly calm at first and it makes you feel reassured and you even find yourself exhaling and thinking \u201cThis isn\u2019t so bad.\u00a0 What was I so worried about?\u201d<\/p>\n<p>And then, without any warning, without any bells or an announcement to return to your seats and fasten your seat belt \u00a0&#8212; there is that little \u201cbumpity-bump.\u201d Anyone who has ever flown knows what that feels like.\u00a0 It\u2019s just a bump and then another one, so close together it could almost be interpreted as one bump.\u00a0 It\u2019s harmless right?\u00a0 It happens all the time, right?\u00a0 Or is it more than that this time?\u00a0 Are we going to stop at the two little bumps or will there be more?\u00a0 You still can\u2019t see beyond the clouds but you know the ground is still there and you are expecting \u2013 you are counting on \u2013 landing on a safe runway.<\/p>\n<p>And then, suddenly, there is an announcement over the plane\u2019s intercom.\u00a0 The voice says that it appears we are not going to have a safe and smooth landing after all.\u00a0 In fact, it appears that we aren\u2019t going to have a safe or smooth re-entry and it won\u2019t be a smooth touchdown.\u00a0 In fact, you might not even land at all!\u00a0 What?\u00a0 What did he say?\u00a0 There\u2019s no turbulence, nothing that tells you that you may be in mortal danger.\u00a0 You are still floating up there above the clouds and there is still a lot of time left before our trip is over.\u00a0 It had to be a mistake.\u00a0 They must be talking about some other flight \u2013 not this one!\u00a0 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.\u00a0 It can\u2019t be.\u00a0 And then another announcement \u2013 the one that tells you to buckle up and prepared for a terrifying re-entry.\u00a0 You suddenly realize that you hadn\u2019t been listening when the flight attendants gave you the safety information that you so desperately need now.\u00a0 Where are the exits?\u00a0 Where is that lighted footpath to follow if the cabin fills with smoke?\u00a0 Where are the floatation devices?\u00a0 How do I put on the oxygen mask?\u00a0 He\u2019s looking at me to see if I\u2019ve been listening.\u00a0 Have I been asking the right questions?\u00a0 What were the answers?\u00a0 Am I sure I heard right?\u00a0 What about that exit behind us?\u00a0 Is it closer than the one in front of us?\u00a0 Can\u2019t we just turn around and go back \u2013 go back to where this flight started?\u00a0 I never wanted to take this trip in the first place!\u00a0 Let\u2019s go home.<\/p>\n<p>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\u2019d ever experienced before.\u00a0 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 \u201cuntil death us do part\u201d.\u00a0 At 24, you don\u2019t even realize what that means.\u00a0 Then you get busy with careers and making a life.\u00a0 You think about buying a house and having babies and a quick spattering of fairy dust and your wishes have been granted.\u00a0 You\u2019ve been blessed with two wonderful children and before you know it, those precious babies are growing up and you\u2019re 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.\u00a0 They\u2019ve turned out to be great kids and you couldn\u2019t be more proud.\u00a0 You want life to treat them better than it\u2019s treated you, keeping in mind that you\u2019ve had a pretty terrific life so far and nothing to complain about and not much you\u2019d do differently.<\/p>\n<p>Then one magical day, your first grandchild arrives and you just can\u2019t imagine a more perfect world than this.\u00a0 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.\u00a0 I have a saying what was the nursery here in our home (it\u2019s now the Princess Playroom) that says: \u00a0\u201cDearer than our children are the children of our children.\u201d\u00a0\u00a0 I felt that so completely with our first granddaughter, Eleece and later with Kendall, Taylor and A.J.\u00a0 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.\u00a0 We start thinking that maybe next year, Mike will retire and when they\u2019re a little older, we\u2019ll go on a Disney cruise or we\u2019ll take her to the ocean or buy them a pony or whatever.<\/p>\n<p>We start thinking about a motorhome and repeating our trip across the United States.\u00a0 We want to go to New Zealand and Tahiti and stay in one of those \u201cend of the horizon bungalow\u2019s\u201d that I\u2019ve had so many clients rave about. \u00a0And 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\u2019t a concern, we felt like sitting back and saying \u201cLife is great.\u00a0 We\u2019ve got it made.\u201d<\/p>\n<p>Then suddenly, there is a knock at the door and waiting on the other side of the door is a monster.\u00a0 It\u2019s a huge horrible beast of indescribable proportions who is going to change everything.\u00a0 At first, you think you can stop it.\u00a0 Quick, grab a chair and hit it. Shoot it.\u00a0 Stab it.\u00a0 Throw acid on it.\u00a0 Do something.\u00a0 You can knock it out, you can kill it.\u00a0 You can bury it in the backyard and no one will ever know it came to your door.\u00a0 And then you realize it can\u2019t 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.\u00a0 \u00a0Why?\u00a0 Why us?\u00a0 Why now?<\/p>\n<p>When Mike took the 32 doses of HD IL-2 back in 2004, it was given in Riverside, California.\u00a0 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\u2019s 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\u2019d go back to the motel to get some sleep, get up and take a shower and do it all over again the next day.\u00a0\u00a0 At that time, we had no idea what to expect from the HD IL-2 treatments and we didn\u2019t know anyone else who\u2019d gone through it who could help guide us. We were so uninformed and so lost.\u00a0 It was like being on that mystery flight again.\u00a0 \u00a0One 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.\u00a0 After reading just a few paragraphs, I knew that I didn\u2019t want to read another word and I also knew I could never let Mike read any of it.\u00a0 It was absolutely terrifying.\u00a0 This patient told about his out of body experiences and how he\u2019d 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.\u00a0 With that as my only source of \u201cinformation\u201d 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.<\/p>\n<p>At one point in his treatment, I think it was just before the 9<sup>th<\/sup> or 10<sup>th<\/sup> dose in round one, I unfortunately said out loud \u201cThis isn\u2019t nearly as bad as I thought it would be.\u00a0 You aren\u2019t having any of the side effects we\u2019d heard about and other than being tired and a little agitated, this is doable.\u201d\u00a0 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 \u2013 not singly \u2013 but in mass.\u00a0 Poor Mike.\u00a0 Every imaginable side effect and some that had never happened before hit him like a ton of bricks.<\/p>\n<p>We talked to Mike\u2019s 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.\u00a0 Since then, we have probably counseled at least 20-25 other \u201ccouples\u201d who were about to take this journey.\u00a0 We wanted to \u201cpay it forward\u201d so to speak and wanted to make the unknown a little less scary for them.\u00a0 I think we have succeeded.\u00a0 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.\u00a0 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\u2019ve formed bonds that will be with us forever.<\/p>\n<p><input \/><input \/><\/p>\n<p><input id=\"gwProxy\" type=\"hidden\" \/><input id=\"jsProxy\" onclick=\"jsCall();\" type=\"hidden\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Mike and I were both more terrified of the three weeks that lay in front of us than we had been about anything we\u2019d 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 \u201cuntil death us do part\u201d.  At 24, you don\u2019t even realize what that means. <\/p>\n","protected":false},"author":5,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[4],"tags":[],"class_list":["post-987","post","type-post","status-publish","format-standard","hentry","category-blog"],"_links":{"self":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/posts\/987","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/comments?post=987"}],"version-history":[{"count":2,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/posts\/987\/revisions"}],"predecessor-version":[{"id":989,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/posts\/987\/revisions\/989"}],"wp:attachment":[{"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/media?parent=987"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/categories?post=987"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.ackc.org\/jayedit\/wp-json\/wp\/v2\/tags?post=987"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}