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Home » My Health Updates » Hope — and the Joy of Cold Cereal

Hope — and the Joy of Cold Cereal

Posted by on February 12, 2013 in My Health Updates, Targeted Therapies (Sutent, Afinitor, Cabo, etc.) - 44 Comments
Hope_Image

On the morning of one of the more dreary days of early last week I walked into the den and saw my teakettle sitting cold on the armchair table. I looked for the hot steam drifting upwards from the spout and could find no evidence of warmth emanating into the morning’s cold air. Through the window I could see that the sky was the color of aged steel. There were still some lingering light patches of snow on the ground. I turned on a lamp to chase out the gloom and realized then that neither did I smell eggs. Or biscuits baking in the oven. Not even cinnamon rolls. Something was amiss. Wrong, terribly wrong. What foul side effects of Cabo had descended upon me? Mental confusion? Hallucinations? Where the hell was my newspaper? Panic.

So I did what any mature man would do in such a time of crisis and called my mom.

Tealess, warmthless, I sat in my cold chair, the colder receiver of the phone against my ear, wrapped in a blanket and listened – patiently, I like to think – for a minute or two while my mother talked about her morning round of tennis in Savannah. She had just returned home yesterday, after a few months of staying with us and helping with the house and kids – and me – while I was going through some difficult months with the cancer. She had been back in her southern clime for less than a day, and instead of mourning the distance that separated her from her child she had spent the morning with friends out in the blazing sunlight whacking a little fuzzy yellow ball across a net. The temperature was in the seventies, she informed me. This was too much. Did she have no feelings at all?

“Mom,” I interrupted her, “I had to fix my own breakfast this morning.”

 

My mother had come up in the late fall when my health was deteriorating. If there is not already a saint for caregivers, I think I’ll put her name in. Whenever there has been somebody sick among our family or friends, she has gone to them. From the moment I was diagnosed, she’s been at my side.  She was at Duke for every IL-2 treatment, stayed in the guest house at the NIH during the IL-15 trial, and has been at our house weeks at a time. The weeks turned more permanent as my health deteriorated with winter’s onset.  And after our stay in the hospital in January, when things looked particularly bleak, my dad came up to join her here in Alexandria.

Only three weeks after taking a sabbatical from his job and shutting down the house in Savannah, however, my poor dad was heading back home. He had expected to be here for longer as my health either deteriorated further or, more hopefully, began to gradually revive. Unexpected by anybody, though, my health underwent a startling reversal only a week after starting Cometriq (Cabo). Considering this, I think he was okay with the inconvenience.

A month ago, we weren’t sure whether I would live or die. Tied to IV and oxygen lines in a dreary hospital room, I listened as Dr. Hammers proposed an emergency chemotherapy round to possibly buy me a couple of weeks as a “bridge” until the Cabo surfaced on the market. Even the Cabo – considering my luck with previous treatment regimens – seemed a long shot. Today I’m moving freely about the house on my own, facing new challenges of returning to a more normal routine. A month ago simply walking up the stairs was enough exertion to force me to sit down and catch my breath – often requiring oxygen. Today I’m running up and down the stairs all day long. I hadn’t driven in months. In fact, Dena has stolen my car and left me with the minivan. Yeah, as if facing mortality weren’t enough … but a minvan? Yesterday, I got dressed and drove down to the local coffee shop. Admittedly, still in the minivan … but we’re making progress. Today I went out to a long lunch with a friend. I do not need oxygen now, at any time. I can sleep through the night, and I have energy through the day. When I breathe deeply, I don’t feel my lungs crush in on me. I can hold conversations without breaking down in coughing jags. I don’t vomit every morning. I’m not losing weight; indeed, I’m gaining weight, having put on nearly ten pounds since the first of January. I’m not going to pretend that my health is strong yet, not yet –but it’s getting stronger each week and is, I believe, on a steadily upward trajectory.

In other words, my parents were able to go back to Savannah because I’m strong enough to manage without additional help. A month ago, nobody expected this. The turnaround has been astonishing. A miracle, in the true sense of the word. Your prayers have been working.(Keep them coming.)

 

Cabo is supposed to be a pretty toxic drug, but I have managed the side effects well. Fatigue was especially strong for a while but it has lessened as my body has adapted to the drug. Nausea hits pretty hard in the mornings after I first awake, but Zofran and Compazine usually work well enough and it fades by late morning. I get some skullrattling headaches on occasion, and there’s some hand-foot syndrome challenges similar to what I had with Sutent and Inlyta. All in all, though, the side effects have not been too bad.

I won’t undergo another CT scan for another month, so I can’t know for sure whether the mets in my lungs are continuing to shrink. But my body can feel a clinical difference. This isn’t subjective; there’s no disputing the physical change between now and early January. The real questions are: First, to what degree is the drug having an effect – are the tumors continuing to shrink, and by how much? Second, how long will the drug work?

For the first time in a long while I’m anxious about getting a CT scan. I’ve received disappointing scan results for so long that at some point I quit worrying about them. Now, I worry again. Will the next scan confirm what I’m feeling physically? Will it showed continued results? I haven’t worried in a long time, and it feels good to have even the simple opportunity to worry. It means there’s hope – which, a month or so ago, was faint. Today, it is everywhere. It is a reminder: Never give up, never lose faith.

I can’t know whether this reprieve will last, but, given this new life, I plan to embrace it while it does. Even if it means having to make my own breakfast again. Hello, cold cereal.

  • Jim G

    I know Dena is especially loving driving the A4, but way more than that, that you Chris are up to driving the mini-van, in all ways.
    What an incredible journey, which we are all so lucky to have you share with us.

  • Mike Venable

    The kick that I imagine in your step is also present in your writing. How one feels physically is an important cog in the writing wheel. I know, because my cog is currently busted. Chris, I celebrate with you today and every day and this news warms my kettle. Carry on, brother!

  • Brian Walsh

    This is so great to read my friend. Keep up the fight!

  • Tom Schranck

    Chris, you have made my day. I check every day, actually several times a day, to see if you or Dena have posted a new update. As I was sitting here making plane reservations on Southwest to see Dr Hammers at the end of the month, your latest post popped into my email. So happy to hear that your suffering from the Cancer has subsided, but sorry to hear that you have to eat cold cereal. You set a wonderful example for all of us to keep the faith and continue to fight. As John Denver would say…..”Right on!” Take Care
    Tom Schranck

  • Karen in Ottawa Canada

    I want to make you hot tea and eggs and toast and laugh with you (NOT at you) while you storytell between bites! hmmm, time to start planning my next road trip

  • Kim Larkin

    Ridley and I are doing a happy dance!!! This is awesome news! Yay to the power of prayer, of faith, of miracles. Love you!

  • Meredith

    Well, pie is awfully good for breakfast, and there’s a three-day weekend coming up so I will do some baking on Monday. An occasion as happy as this should not leave you eating mushy flakes in the morning.

  • http://www.facebook.com/nicole.altenes Nicole Norton

    Hey cuz! I cry every time I read your posts and then my mom and me cry together on the phone chatting about what a miracle all of this is! You know I only live a couple of hours away and I was telling my mom I would love love love to come up in the next couple of months and watch the girls one night so you and Dena can go out on a hot date!!! Keep getting better!

  • Liz UK

    I hope that your mom carries on playing tennis,that your father returns to work, that you carry on driving the mini van, and maybe Dena will even let you have the car sometime. Wonderful news,I don’t pray often, but I’ve said a prayer for your next scan.

  • Dana Johnson

    What great news and a living example of answered prayer. Every good and perfect gift is from above….and that surely includes Cabo. Your new sense of hope reminds me of a favorite scripture Jeremiah 29:11 – For I know the plans I have for you,” declares The Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

  • Tom Schranck

    Oops…I’m getting forgetful in my middle age… John Denver said “Far out”

  • Pat Yovich

    So good to read your update and that you are on the “upswing”! Saw your mom the evening she got back and told us that you were getting so much better! She was beaming “ear to ear”….Prayers are powerful, and your mom is almost as powerful! We continue to pray for you, your scan, Dena, the kids, and all the “friends” who continue to pray for your healing. God gave us the “present”…live it to the fullest, each day..We continue in our prayers, and keep gaining weight! God bless you all…Pat and Alan, Pooler

  • Kathy Chapin

    I can’t tell you how happy this makes me, even though it makes me cry. It’s a happy cry. You’re so brave and have gone through so much! Prayers do work and I’ll continue to pray for you, Dena and the girls. Love you all, Aunt Kathy

  • Wendy

    I am so happy. Oh–for you, too. Seriously, you make me smile. Thanks.

  • Helen Frith

    So happy for you and your family! We will surely continue praying for you!

  • Pam

    Chris so happy to hear of how you are doing. Your post made me smile from ear to ear. The prayers will keep coming from this family. Love you all .. Pam Hendricks

  • Leticia Hahn

    http://csn.cancer.org/node/253585
    I’m excited to hear of your experience with CABO. My 29 year old identical twin also has stage 4 kidney cancer with it in the lungs. Your post prompted me to research this drug. Thanks for the info! I came across your name on the site as people talked about this drug! I guess you are giving people everywhere hope! Prayers are with you and your family! Thank you for doing what you do! I’ve followed you since my sister was diagnosed, three years ago. I have even been able to give her heads up before she started Sutent and other drugs about some of the issues you had faced that she may face as well.

    • Karen

      So I am assuming the only way to ge Cabo is thru a clinical trial right now. Very excited for Chris and his family as well as other RCC patients.

  • Teresa Shehada

    I found myself smiling throughout!! What great news to start the day! Keep on fighting; so many are cheering you on. You are an inspiration. Teresa Shehada

  • LaNeia

    Carlos and I are so very…can’t think of the word – but we are overjoyed for this new light in your life. We all hope and pray for continued progress. Have I shared this poem yet? It is one of our favorites:

    Sometimes

    Sometimes things don’t go,
    after all,
    from bad to worse. Some years, muscadel
    faces down frost; green
    thrives; the crops don’t fail,
    sometimes a man aims high, and all goes
    well.

    A people sometimes step back
    from war;
    elect an honest man; decide they care
    enough, that they can’t
    leave some stranger poor.
    Some men become what they were born
    for.

    Sometimes our best efforts
    do not go
    amiss; sometimes we do as we meant to.
    The sun will sometimes
    melt a field of sorrow
    that seemed hard frozen: may it happen to
    you

    ~ Sheenagh Pugh

    • http://www.facebook.com/robinjoker Robin Martinez

      Great poem, it brought tears to my eyes. Thank you for sharing.

  • LINDSEY

    Wonderful Chris! Watch some funny old 80′s movies and eat a lot of good tasting and healthy fresh fruit with that cold cereal! Keep you in my healing prayers. Every moment is a new one! There is only Now! Thank you for your inspiration and positive attitude. :) Sharing as you do is so helpful to everyone.

    Much love to you and your beautiful family!

  • Amy Hadley

    This is the best news I have heard in so long! You keep fighting, Chris, and we’ll keep praying.

  • Bicheng

    So happy to see you back! I’ve been waiting for your posts for so long! Good to hear about your reversal! Keep going! Good Luck!

  • Frank

    Encouraging signs. God bless. The prayers will continue for you and yours.

  • Julie

    Chris and Dena, What a wonderful update!! I’m so pleased and excited that Cabo seems to have made such a difference. Keep gaining weight and taking care of yourself – and enjoying your time with Dena and the girls. God bless.

  • Marianne

    Wonderful, joyous news Chis!

  • Matt Ivy

    Yes it will Chris! I’m a very strong believer in Cabozantinib…and I believe it will become a real blockbuster drug like Sutent was when it hit the market.

    This is a huge 180 degree departure from the ‘hope for the best, but expect the worst’ mindset that we’ve always have had with Tina prior to her re-staging scans.

    I know I can’t see you or really know what kind of shape you are in but my gut feeling is that you are getting a real partial response. And I don’t mean a mixed response where some shrink and some grow – none of that nonsense! Straight across the board response!

    I’m even willing to put money on it if anyone wants to take the other side of my bet!!!

    Kindest regards,

  • LaDonna

    Must be the week for good news. My husband, stage 4 cancer survivor, had his latest CT scan results this week with wonderful results. Tumors have not increased in size and some have actually gotten smaller.. Sutent working..Yes! Continue the battle guys!

  • Gina

    You don’t know me, but I have been following your story since I found this site years ago when a dear friend was diagnosed with RCC. I have been praying for you – in my non-denominational, non-traditional way – regularly and am beyond thrilled for this great news. You and your wife are inspirational, as is your humor and grace. In your honor, I will now go have MY cold cereal. I wish you a (very) long, and steady road back to full health.

  • http://www.facebook.com/atlanta.pros Atlanta Web Pros

    We will certainly continue with our prayers Chris. Best of luck for continued progress. Millard (cousin).

  • http://www.facebook.com/dawnveselka Dawn Boyesen Veselka

    Happy tears are flowing… YAY for the great news along with the trials and tribulations of making your own breakfast! Now, we really need to talk about the minivan… :) Lots of love and more prayers headed your way…

  • Maryalice

    I am sooooooo happy to hear it!! Best news EVER!! I wish I could give you all a GREAT BIG HUG!! XOXOXO Maryalice

  • Minnie

    Thank you for the good news! And remember, cold cereal must be eaten with a fresh comic book by your side and the cereal must never ever be allowed to become soggy. If you don’t believe me, ask Linus van Pelt, the cold cereal champion in Peanuts. :-)

  • Laura Jullien

    This is fantastic news! I will continue to pray every night. Now break out the Captain Crunch! You have earned it.

  • Sandy Hansen

    Chris, Dena, Kate and Josie. No soul can read your post and not have tears of joy instantly spring to his/her eyes. It has been far too long since you were able to post positive news; you had us worried, there, kidney-onc friends! The news of your favorable response to Cabo has brought tears of joy – unbridled, hope-filled, Easter-season-type joy – to all four corners of the globe. May your scans show shrinkage (of the mets, not body parts) and may you be able to celebrate the glorious spring that the D.C. area enjoys in ever-improving health, with your three girls dancing in the sunlight under the cherry blossoms! Continued great progress towards good health! All of the members of the Battle family provide hope and inspiration to folks who are sometimes short on both. Many, many thanks from a grateful “nation” of mRCC folks.

  • phillip dekemper

    I dont know why I did not get a notice that you posted an update so I sent an email to Dena earlier today. She pointed me to this entry. I am sitting my chair with tears running down my face. I am fairly certain that these cancer drugs and treatments have turned me into one of those people that cries during AT&T commercials. Happy for you is an understatement. Regardless of side effects and duration, you have been given a blessing that is long overdue. Keep getting stronger and I will keep praying that something permanent is out there for you.

  • Don Miller

    Thank you

  • http://www.facebook.com/robinjoker Robin Martinez

    There’s always Pop Tarts. I am so glad you are doing well!

  • Lisa Morton

    Even my mom is astonished as she asks about you on our weekly calls. The other day she said “I’ve been praying for him every day.” Now I’m not one to say that I’m a believer, but I know this much. If anyone has the Almighty (no matter your version) on speed dial and deserves Him or Her to pick up, it’s my mother. He/She owes her a few. I’m glad that she’s starting to cash in. Love to all!

  • Kathleen

    The mundane and miraculous all in one. Pretty cool. Go Cabo Go.

  • Tammy Hembree

    Chris, I have some questions? I was started on Votrient and could not take it, because it slowed my heart beat down to low 31 per minute. They just started me on Afinitor. I had a 9.6cm tumor on my right kidney. Had old fashion surgery 4/10/12 my lung dr found the kidney cancer. I had an 18mm nodule on my my right lung that has shrunk to below a centimeter. The left is another story those are upper lobe and are growing, grew more in the last 3 months than in a year. They will not give me the drugs up have mentioned do to other health issues. After running the side effects of both drugs I’ve taken, I’m thinking why not? The side effects are all life threatening. Did you take the Afinitor? Did you have any success with it?

    • Dena Battle

      Tammy, Chris did take Afinitor, but it wasn’t a huge success for him. While you’re taking it, be sure to watch for shortness of breath and cough — it can cause a form of pneumonitis — it’s very treatable, but you want to watch for it. If you want, email me off list, we might be able to give you some ideas about other options: dena_battle@yahoo.com.

  • Ms

    This is wonderful, wonderful, wonderful. I’m cmet positive so there’s some hope this drug will work for me. Waiting on it now. Thanks for this great news.

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