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Home » My Health Updates » A tough month or so

A tough month or so

Posted by on September 17, 2012 in My Health Updates - 27 Comments
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I ran into an old friend the other day who had recently started chemotherapy.  He looked good, but tired.  I knew the treatment was tough.  We chatted a bit, and he mentioned that he really appreciated all the warm wishes and e-mails but that he sometimes became weary of well-meaning friends and family telling him to “be positive.”  I laughed a bit because I knew what he meant.  I haven’t undergone cancer treatments myself, but I know what Chris has gone through each and every day for years now. And, honestly, when you’re in the middle of this struggle, you’re not thinking sunshiny thoughts. It can be a grim experience, all the things big and small wear on you day-in and day-out. You want to stay positive. Not just in the sense of putting on a good face for family and friends but in the mental challenge you’re up against. You have to stay positive; it’s not an option. To falter can be devastating to your psyche. And, yet, you do falter sometimes. And whispers of frustration and despair do creep into your head no matter how hard you fight. I compare it to a long run — towards the end I’m running as hard as I can, keeping my focus on finishing without letting up, and I do get there. The thoughts I’m usually thinking, though, aren’t fit to print in a blog.

That’s kind of how the last month or so has been for Chris and me. We’ve been through a lot. Two bronchoscopies, a new drug therapy (Inlyta) with all the side effects that go with it and a double-dose radiation treatment session with double the fatigue. Dr. Collins, our radiation oncologist at Georgetown, joked during one of our recent appointments that he was surprised to see Chris sitting in an upright position.

The physical grind isn’t necessarily the worst, though. At least, I feel that I can say that. Chris, of course, is the only one who truly knows. Yet I’m with him every day. I see how the radiation wears on his body. I hear him when he is getting sick; I wait anxiously outside the door. When he wakes up in the middle of the night, I wake up with him. The emotional grind can be even more wearing in some ways, though. It’s an insidious form of weariness, slowly building as little bits of disappointing news stack layer upon layer over time until you realize that you’re exhausted.

Chris and I have been at this fight for more than three years now. We have tried just about every treatment option — from gold standards to untested clinical trials — and nothing has worked. We have never had a CT scan return with fabulous news. We have clutched the positive when there has been some hint of regression or stability, simply ignoring the growth of the disease elsewhere. Even though we knew better. The truth is, there has never been true regression of Chris’s disease. These drugs have worked for so many others; why haven’t any of them worked for us? It can seem unfair. I feel absurd just saying this. Life is not fair or unfair. It just is. At some point you just want to shake your fist and ask why can’t we have what others have? Why can’t we have at least some relief, even if for a little while?

Following the first bronchoscopy last month, we were certain that we’d figured out what was causing Chris’s breathing problems. We were alarmed that a tumor was actually growing within Chris’s airway, nearly collapsing his lung, but we were actually happy when we learned what was causing the problem and that it could be fixed. Dr. Anderson, our pulmonologist at Georgetown, burned out the tumor and Chris’s breathing was better overnight. We were excited — took the kids down to Disney World.  Then, about a week after the procedure — right in the middle of our Florida trip — he started having a congestive cough again.  The shortness of breath kicked in and he was feeling wiped out.  He was still undergoing an aggressive radiation course, so we took comfort in this being the explanation for the fatigue and shortness of breath.  We kept our hope pinned on the already scheduled second bronchoscopy, where Dr. Anderson was planning to install a stent to keep that bronchial tube open. This stent became a kind of mythic operation in our minds. It was going to solve not all, but the worst of the breathing congestion.

A funny thing happened on the way to the second bronchoscopy, though. (Funny strange, not funny ha-ha.)  That latin-spewing monk hadn’t moved back in — there wasn’t even a garden gnome to be found.  Chris’s bronchial tube remained almost 90 percent clear from the previous procedure.  Dr. Anderson burned away some new tumor growth, but he didn’t feel the need to insert the stent.  Most people would expect patients to be ecstatic with that kind of news … but to be honest, we were disappointed.   Because if the bronchial tube isn’t blocked, then we still don’t know what is causing Chris’s congestive cough and obstructed breathing. And not knowing means we can’t do anything to proactively fix it. We are left a little confused, a little disappointed, a little frustrated. A little anxious.

We went back to Johns Hopkins on Thursday for a CT scan to see how things were looking throughout the lungs and chest.  To add to our already confused minds — the scan wasn’t very conclusive either.  A majority of the mets in Chris’s lungs grew again, but the radiologist did note that some didn’t seem as “enhanced.” Others appeared to be showing signs of necrosis (which means they’re dying).  The necrosis, however, is likely due to the radiation — which was of course the whole point of more than a month’s worth of daily radiation sessions. These radiation sessions, however, have been focused on two specific monster mets — one in Chris’s right subclavicular area and another along the wall of his left lung. They could not address the numerous (“too many to count,” according to the radiologist) mets shotgunned throughout both of Chris’s lungs.

So what does it all mean? Do we stay with Inlyta and see if we get some clearly positive results? Dr. Hammers, our medical oncologist at Johns Hopkins, didn’t think so. I don’t either. We all discussed it and decided to cut our losses and move to a new drug.

The new drug we’re trying is called Afinitor; it’s an m-tor inhibitor.  It’s similar to drugs like Sutent and Inlyta — but it blocks nutrients to the cancer cells from a different pathway.  Dr. Hammers does not show a great amount of confidence in Affinitor. He actually apologized for not being able to offer better options. Clinically, results of patients on Afinitor aren’t as exciting as results with the other drugs (which is why we didn’t try it first).  Still, we have hope.

While Afinitor may not work for as many patients as do the other drugs, it does work for some. It produces stability in a reasonable pool of patients, and at this point stability would be welcome. Even better, in a small sub-set of patients (about 2-3 percent), Afinitor has resulted in a significant reduction of tumor volume.  Who knows — Chris might fall into that sub-set.  We knew IL-2 produced a complete response for only about eight percent of patients, but we were willing to go through the hell of that treatment because who’s to say we wouldn’t be one of those eight-percenters? And while stability of disease would be a welcome change, who’s to say we won’t be one of the three-percenters? Somebody will be. Why not us?

So, we’re going to give it a try.  And though we may falter briefly, though we may not feel all sunshiny at the moment, we’re in the battle and Chris is still fighting hard. We’re gearing up again, and we have faith that this time it will work, and we will have time to resume a somewhat more normal life again, at least for a while. And so I hope that when we get scans in a couple of months, I’ll be sending a new positive update complete with rainbows and chocolate sprinkles. And Chris will be playing golf with his brothers again. And Josie will be crawling all over him, climbing him like Mt. Everest and jamming elbows in places they should never go. And Kate will be reading Scooby Doo to him and drawing her fabulous renditions of Minnie Mouse and Goofy. And I will be sitting with him, taking it all in, grateful that, finally, things are going our way for a while.

  • Vicki Loucks

    You’ve hit the nail on the head with this one. There are days where positive is the furthest thing from what any of us in this fight can be. But hang in there Battle’s. This is a rough rough road and you’re both walking it fiercely. We too had a long conversation about Affintor with Dr. Hammer’s last week. It may not be the wonder drug that some of the others are billed as, but it may be YOUR wonder drug and in the end, that is all that matters. Wishing you continued strength and positive readings in the next CT.

  • Roxanne

    Praying for you guys.

  • LaNeia

    The frustrations (such
    a limited word really) and pain expressed in each sentence resonates with too
    many of us in your same shoes. My mind translates these thoughts, sometimes on
    a daily basis, yet I can never bring myself to speak these feelings to anyone
    (friends or family). Sometimes I just want to unload it all, but yet, I don’t
    even know what to say. The thoughts are so rambling at times.

    Sometimes I just look
    at my husband and say “how did we get here?” and we reminisce on just
    how crazy life can be.

    But you’re right, it is life and we push forward trying to live
    it as best we can. I hope and pray for you, Chris and your family – as I do for
    my own and all of those out there who share in this common RCC drama.

  • Patty Roe

    Love you guys and thinking of you always!

  • http://www.facebook.com/pat.yovich.1 Pat Yovich

    HI Dena and Chris
    Remember the “Peaks and Valleys?” This was a huge valley fo you both (and your families, too!) The deepese! But the mountain is there and it’s worth the climb, even part way up you see things differently. And with your writings, you don’t know how many other people you help…. me or someon else may be down in one of those valleys – and here comes the Battles….a deeper valley…WOW! we say, if they can do it, so can we….We keep praying for you and your family…just take one day at a time…Live for that day….and it’s difficult, we know, but you have lots of friends praying for you …Keep going…You will be Rewarded! Love and Prayers, Pat and Alan Yovich, Pooler

  • susan Hutchinson

    Great to hear from you, Dena! Thank you for being so open and honesmess,t. This place is a mess! Don’t know the “whys” of everythin, even when I think I do. You are not alone in this struggle. It is too much to bear alone. So glad you belive aLnd trust. Let HIM carry you through this. Use HIS strength. And, yes, I still pray for miracles. We love y’all! !!

  • Daniela

    I feel you Dena. Reading your words not only make me cognizant of your struggle but you and Chris both have this gift that makes the reader “feel” your struggles. I understand your feelings of disappointment at not knowing what is causing a medical issue so that it can be properly treated; I’m at that point myself. Keep looking is all we can do and living as best as we can while we do it!

  • Julie

    Thank you for taking the time to post an update. Fatigue and frustration don’t cover what you and Chris are experiencing now. All you can do is keep putting one foot in front of the other and be present. Ask for help as often as you can. I’ll keep sending prayers and positive thoughts about Afinitor. Take care. God bless.

  • Mike Venable

    The only thing I can think that could be worse than what you’re going through, is having to go through it alone. Chris is so lucky to have a warrior bride beside him through all of this. You two also have the rest of us. We’re hopeful. We’re prayerful. Dena and Chris, I’m pulling for you with all my heart.

  • Karen Voorhees

    I appreciate your posts and honesty….what we all need! I am praying that this Afinitor is your ‘”miracle drug”!

  • joi

    As I read the beginning of your post I felt really emotional. It was so honest (as you always are =-) ) and made your struggle even more real to me. I only see Chris ever few months, but every time I see him you and him are really on my mind afterwards because I know this has to be hard. You and he are such a inspiration to how to keep going through it all. When I saw him last week I noticed he lost weigh, but his spirit still seemed like a health size. The way you both have been handling this struggle has been amazing and a true example of how one should behave when they really have faith. Chris is such a rock star to me. No matter how difficult the trials has been, he has been like a super hero…with you being his Lois Lane =-). I don’t get to read all you and Chris’s post, but the ones I do builds my faith just that much more, as I read how yours is so strong. I am praying for you all.

    joi

  • Kim Larkin

    All I can say is I love you all. Many prayers and hugs and positive energy waves being sent to yoy.

  • Margaret and Chuck

    Your constant strength and love are evident in all you do. Thinking of you both and Kate and Josie. Praying daily for “things to go your way”, too. Love you .

  • Travis

    Thanks for sharing. I get it. I have been fighting Kidney cancer myself for the last 7 years. This December will be 5 years with stage 4. It does seem very overwhelming at times. I wish I could say something that would make you feel better. I read your post and knowing that there are other people out there with the same hopes as mine actually has made my day better. I dream of the time when I get a CT scan and the doctor tells me my tumors have shrunk. It may never happen but at least I know I am still here with my wife and my two kids enjoying every second I have with them. Please keep fighting and know that you inspire others to fight as well.

  • Amy Abernethy

    Dearest Chris and Dena, Dena and Chris: Reading and thinking about you both, and the kids. None of this is easy – at the best of times, and it can be downright overwhelming at the worst of times. Your poise, grace, and fortitude is a message to us all. Please know that if there is ever anything I / we can do – we’re here. With love, Amy & Steve

  • Maryalice

    I’ve been thinking about you guys so much the past couple of weeks. Thank you for the update. I wish I was there to give you both a big hug! I know you may not feel like it, but you are still incredibly positive! Let’s face it – it has been a tough three years for you guys, not just a month (or so)! Those of us sitting on the outside looking in, can only imagine the trials and tribulations that go with this horrific battle you are fighting. I’m sure your emotions are on a constant roller coaster…with positive spirits waning with the ups and downs of all that the two of you are going through. Staying positive ALL the time would be very difficult, if not impossible.Your positive energy and up beat blogs are an inspiration to everyone who reads them. Keep your heads up Battle’s, we ALL have faith Chris can beat this!! You both have my utmost respect. I am praying for a quick and positive response to the new drug. Much love, Maryalice

  • Tracy Hoffman Freeman

    Hi Dena, I am not going to say “stay positive”. I will say that cancer sucks so much and that yes, life just “is”. Sharing your life is so courageous. It connects us all to what we really are – humans with thoughts, feelings, hopes, dreams and the desire to get as much out of life as we can. What really matters is what really matters. You guys have discovered this, but not in a way that you could have every imagined. We pray for you daily – the kids pray for “Mom’s cousin’s husband”, which tells me that we have to see you at Christmas or during the summer soon. Thanks for sharing and I too, hope, things will go your way for a while.

  • Diana Ludlow

    Dena and Chris: it’s during these periods that u (try to)
    rest in the arms of your faith and the love and strength of your family and friends that are standing with you in this fight. May you feel a triple dose of this strength, comfort, and love during this time.
    Diana Ludlow

    • Chris Fegles

      Diana, beautiful words of encouragement! Dena and Chris, we are all praying for you both, that you find strength and encouragement, blessings and wisdom in the days, months and years to come! Thank you for your transparency as you give us the whole story, not just the humor in the journey. We are all with you in heart and spirit, chris

  • Teresa Shehada

    I am left speechless at your courage and strength. I pray for a miracle for you and your family.

  • Matt

    Dena: Great blog! I hope the Afinitor works for Chris, I’ve been on it 4 weeks now.
    Namaste.

  • Alice M

    Your blog post was listed on Facebook. I have only read this post, and I am awed

    I to am a Kidney Cancer patient. Patient just does not sound right. I am tempted to call us victims. How can one be a patient of cancer. How ridiculous that sounds.

    I am wishing both you and Chris all the best with all my heart. Your story has truly touched me.

    Both of you are amazing. I found a saying the other day, “I want to live, not just Survive”.

    We are on the same journey, but we are taking different paths. I hope that Aifnitor works for Chris.

    Take care of you,
    -Alice

  • Asa Hutchinson III

    Thank you for sharing Dena. You both are such an inspiration to me. I know Chris is going to beat this thing and you will be as much to credit as anything else. Love you guys!

  • Minnie Kriek

    Hello Dena, this post has made me think of Shakespeare’s Sonnet 116

    Let me not to the marriage of true minds
    Admit impediments. Love is not love
    Which alters when it alteration finds,
    Or bends with the remover to remove:
    O no! it is an ever-fixed mark
    That looks on tempests and is never shaken;
    It is the star to every wandering bark,
    Whose worth’s unknown, although his height be taken.
    Love’s not Time’s fool, though rosy lips and cheeks
    Within his bending sickle’s compass come:
    Love alters not with his brief hours and weeks,
    But bears it out even to the edge of doom.
    If this be error and upon me proved,
    I never writ, nor no man ever loved.

    Despite the many setbacks and difficulties the one constant that has always been there; in the funny passages, during the scary procedures and the long waits, is your tremendous love for each other.
    Thank you for sharing that with us
    God bless

  • Rick Welsh

    Dena and Chris,
    As we all know, no one can predict how any individual will react to any particular therapy. You can be a part of that 2-3%. Someone has to be and I hope it is you.
    Rick Welsh

  • Luanne

    Dena/Chris,
    Thank you so much for sharing your story with such honesty, grace and dignity. It’s been one year since our battle with Kidney Cancer began and our story is very similar to yours. Documenting your story is truly a gift for others struggling with this horrible disease. Please don’t give up, one treatment can change things entirely and we believe they will. Thank you again for being the wonderful people you are.
    Stay strong and know that you’re in our thought and prayers.

  • Jill Geer

    Dena, I have always been amazed and impressed by your family’s ability to keep as much normalcy in life as possible. Going to Disneyland in the midst of treatment, Chris still going to work … stuff I don’t think I could do. Your family is handling everything in the most awe-inspiring way possible. Keep kickin’.

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