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My own research mouse — and possible chemotherapy regimen

Posted by on January 8, 2013 in My Health Updates - 20 Comments

The man was probably in his seventies, and he sat in a wheelchair in front of us, attached to an IV line. Dena and I were waiting to see Dr. Hammers and we were chatting with Alice, our nurse from my clinical trial days. He wore a thick red sweater and an Irishman’s cap. He, too, seemed to be waiting for an appointment. The IV pole began to beep, which happens any time a tube may get a kink, a battery may run low or for any number of reasons.  Without really missing a beat in our conversation, Alice stood up and corrected the problem. She kept talking as she pressed the necessary buttons to silence the machine and then turned to the man and said, “That ought to take care of you for a little while.”  Then she asked him how he was feeling.

“Awful,” he said. “Just awful.” He paused for a moment and then followed again: “Just really terrible.”

He didn’t seem to be in any immediate distress, just unhappy in general. It’s difficult to blame a man for being unhappy that he has cancer. Nonetheless, his answer caught me by surprise. We told him that we were sorry that he wasn’t feeling well and then sat there stupidly. What else was there to talk about now?

Maybe it’s just a byproduct of growing up in the South but when somebody asks me how I’m doing I can’t help but automatically reply – even when I’m full of it – that I’m feeling just swell. That’s what you do. People say – Hey, how ya’ doing? And you say, Great, great, how about you?

This drives Dena mad. Whenever I first greet Dr. Hammers and he asks how I’m doing, I say – fine, just fine.

“No, he’s not,” she pipes up.

I got a taste of how my mindless civility can be interpreted when the pulmonologist entered my hospital room and asked how I was doing. Fine, just fine, I said.

“Excellent,” he replied. “Then I can go. I suppose we don’t need to do the bronchoscopy.”

Uh, no. Not exactly what I meant. I had to do some backtracking.  After all, it was a holiday and getting one of the best pulmonologists at Hopkins to come in on New Year’s Day to do a bronchoscopy isn’t an easy trick.  If he walked out of that room, I was pretty sure that Dena might do the bronch herself, just to prove her point.

So Dr. Feller-Koppman agreed that a bronchoscopy was a good idea.  Even he didn’t want Dena digging down into my bronchial tubes. Not seeing any clear evidence on the CT scan of obstruction in my airways, he initially wanted to do a flexible bronchoscopy – which is really just sort of a submarine scope out.  If they found something that might need to be burned out or biopsied, they’d go back in with a rigid scope. So I pulled out pictures I had from my previous bronch, showing the dangerous growth that had expanded in my left bronchus previously – also which had not been detectable on a CT scan.  Dr. Feller-Koppman was excited to see them – almost giddy. Doctors do like to look at pictures of diseases. After the pictorial history of my pulmonary experiences, he changed his mind and decided to go for the big guns first.  So, we scheduled the bronchoscopy the next day.

Dr. Hammers was excited too because he wanted to get some biopsy specimens for his lab research.  He took some of the tumor material and is grafting it into mice.  The hope is that they’ll grow little renal tumors just like mine – yeah, I know, kind of perverse. Hey little buddy, here’s some cancerous tea – enjoy! That said, the cure for cancer will not be found without research. By conducting this research, we may eventually find insight into which drugs and treatments might work on kidney cancer – which still lacks reliable curative treatment options. Although cancer deaths in general are on a slight decline, deaths from kidney cancer are on the rise. Lacking the marketing power of breast cancer, or the large numbers of patients that make pharmaceutical companies see dollar signs, kidney cancer research needs all the help it can get. I’m glad to do whatever small part I can to help move research forward.

Don’t get too excited – there’s only about a 50-50 chance that the tumors will actually grow.  Also, don’t expect to get much reporting back from the mice. Mice are not good bloggers. The lack of opposable thumbs makes typing difficult for them, and when they do bother to pound the keys at all you’ll find that mice cancer blogs are shockingly boring –  largely lacking in clinical observations, they tend more toward long digressions on the culinary minutiae of cheese and insufferable whining about cold hands, cramped running balls, and the dearth of durable chew toys.

In exchange for giving up parts of my lung tissue (even the foul tumor-infested part), I demanded a picture of the mouse – my mouse. Yes, I felt like the rodent was mine now, or that at least we had some kind of bio-psychic connection since we were sharing body tissue. Dr. Hammers brought me a photo the next day on his smart phone. It was a cute mouse, though his ass was shaven at the place where the tissue had been injected. How embarrassing. He kind of looked like an unimaginatively painted Easter egg, half dull white fur and half dull grey skin. I tried to think of what Kate or Josie would’ve named the mouse. Something literal. Bare-assed Barry? Probably not. Something cuter, more compassionate, perhaps. Fluffy. Well — Half-Fluffy? Kate named our pet guinea pig Donut, and Josie named him Puppy Eyes … resulting in the awkward handle of Donut Puppy Eyes Battle. So I decided to go with some similar kind of pastry-inappropriate-animal-eyes combination. Hence: Bug-Eyed Tart.

With that important business settled, we returned to issues of my health. When I had been admitted to the hospital on New Year’s Day, I was having trouble breathing and was frustrated by congestion in my chest. As I noted in my last post, we felt it was likely being caused by one of three things:

  1. The pneumonia had gotten worse;
  2. The tumor in my windpipe had returned;
  3. Or – Dr’s Hammer’s suspicion – tumors in my chest were causing hemmoraging.

The bronchoscopy was to determine if pneumonia or blockage in one of my bronchi was the culprit. I recognize that it’s odd to hope for pneumonia, but I figured the pneumonia could be treated with antibiotics. If it were blockage, it could be burned out, as before.  If it were hemorrhaging, then we faced an entirely different problem altogether – one with few solutions.

Unfortunately, we appear to be dealing with hemorrhaging.

Dr. Hammer’s main concern is to “bridge” my time between now and when the new cancer drug Cabo hits the pharmacies – supposedly late this month. I will admit: It was a bit of a shock when he indicated concern that I might not survive the month. I will also tell you that I’m certain that I will. I may be naïve, but I feel that there’s something more to my confidence. Faith, for one thing. And I feel strong – at least strong enough.

Dr. Hammers offered a couple of options to ensure that I get the opportunity to go on Cabo. One is to go back on Votrient (we’d gone off it while I was in the hospital) to hold back further tumor progression and go on a schedule of steroids to suppress inflammation in my chest.

The second option, which I think he preferred, is more troubling to me. He suggested we could do a course of traditional chemotherapy. He was clear that the chemo would not be curative, but he said it could potentially buy some time – that is, “give us a bridge” to Cabo. I don’t mind the side effects that come with chemo; I’m fairly certain they can be no worse than the IL-2 I underwent in 2010. There is, however, one side effect that I’m not sure I want to encounter – the loss of my hair. All of it. On my head, my eyebrows. It’s not a matter of vanity; it’s a matter of my little girls. I will write more about my feelings on this later, but should the chemo prove unsuccessful and things should go south, I don’t want the last images of me in the minds of my children to be one that is alien to them. I don’t want to scare them. So for now, we are back on Votrient – supplemented with steroids. If things get worse, we may consider the chemo option. I’m confident, however, that we won’t need to do this.

So, for now, we’ll stick to the current plan and take on each day is it comes. And, for now, when people ask me how I’m doing, I’ll continue to say – fine, just fine.

  • Liz

    I’m glad Barry (my Barry not mouse Barry) isn’t the only one who always says he’s fine when he’s not at all. Still I’m very proud of his attitude, you are both very fine men indeed in my book. Liz

  • Maryalice

    I normally pray for a trip to Cabo! Recently I’ve been praying for Cabo to come to you. Your post has made me laugh and cry. Hang in there my friend, doctors are just plain old human beings like you and me. They don’t have a clue – refuse to believe any negative bullshit like that. Please stay strong -

    Love and hugs to all

  • jplantin

    You’re more than fine; you are MIGHTY fine.
    Janet, kc fighter

  • Rebecca

    Always praying! You are a pioneer, our cb friend. So wish we could meet and encourage each other in person. So proud if your spunky wife…we are the best advocates for you guys! Bring on CABO!

    • Rebecca

      Of your spunky wife…

  • Mary Pendaries

    Great post, Chris – bits of it had me laughing out loud (love the pic of the mouse too). And as Liz said, so glad it’s not just my husband who says he’s fine when he isn’t, though think the docs must be getting used to my incredulous double-takes now. Honestly, you men … ! But you are fine men … Very interested to read that Cabo hitting the pharmacies late Jan (wish it were same in UK) and got fingers crossed that pazopanib will tide you over more than effectively until then. Will be thinking of you and Dena.
    Mary x

  • Denise Toolan

    Chris, you will be fine!!! Your attitude and sense of humor and certainly your writing will carry you through this “bridge”!! I’m praying and thinking of your during this time and although we only met briefly I will think of you each and every time I think things are tough!! Hang in there and i know your wife and kids will help you over the bridge!! With sincere gratitude for your courage!

  • DebMaskens

    Thank you for this beautiful blog. A good friend of mine who had papillary rcc went on chemo, but it was gemcitibane (gemzar) and didn’t cause hair loss. He did get a response in the lungs from that “honey comb” appearance that they call lymphangitis I think. Felt a bit flu-like after the gemzar infusions, but it did help. All the best to you.

  • Mike Venable

    Chris and Dena, I could not be more involved in the prayerful, daily remembrance of even a best friend, whom I’ve known for a lifetime, as I am with your family. Your eloquent writing has wedged you into a solid place somewhere along my own double helix of life and because of that, you’re in my daily thoughts. Go on now, get on over the bridge to Cabo and get that going.
    Be strong, soak up all this love that is aimed in your direction from every corner of the compass, and know that the loving arms of an army of fellow warriors are here to fall back upon if you need them.

  • Minnie

    You and your family are in my prayers. God bless

  • Meredith

    Isn’t @Bug-EyedTart Dena’s Twitter handle? ;-) In all seriousness, you continue to be at the top of my prayer list, followed by Dena, then your girls, then your charming parents. I’m sad at this piece of news but am lifted up by your strength and faith. Keep fighting.

  • Becci Saporito

    Praying, praying, praying! We love you all much! Incredible writing! I went from laughter to tears multiple times.

  • http://www.facebook.com/jessica.s.mack.94 Jessica Sullivan Mack

    Chris and Dena, we think about you all of the time. Continue to stay strong. you are less than a month away from Cabo ( I think that was one of my dads favoriteTequilas, by the way,) and I know that you will make it. we love you!

  • Laura Jullien

    I’m praying for you all every day. You’ll make it, I know you will. I’m so sorry that you are having to go through all of this.

    • Anonymous

      Laura, I’ve been trying to get in touch with you. Can you email me at chrisbattle@me.com?

  • Nancy McGuire

    Prayers for you and Dena as you wait for Cabo….keep the faith!

  • Janice Green

    Now faith is the substance of things hoped for, the evidence of things not seen. Hebrews 11: 1(NKJV) “ For we walk by faith, not by sight.” 2 Corinthians 5: 7(NKJV). Chris you have found the key to hope. Praying for you, Dena and the girls.

  • http://www.KidneyCancer.org/ Bill Bro

    Hang in there, Chris! Your friends at the Kidney Cancer Association are all pulling for you.

  • Meg_Nash

    You amaze me, Chris…both you and Dena. You make me smile!! Since I have little but humor left these days, I thought I’d pass along a thought. I remember having similar feelings when I was pregnant about the kids not seeing me as me when my belly got giant and I couldn’t move around. I wore clothes they weren’t used to and just wasn’t myself. Heck, my kids would freak if I’d switch from contacts to my glasses! They’d look at me with these sidelong glances and not want to get too close to me. Of course, they were very, very small then. So, I put on a sports bra, let my giant belly hang out and handed them jars of paint….to which they proudly painted their little brother still inside me a thousand shades of happy. Was it odd? Sure it was. But it brought them closer to the “new” me and they felt connected, invested in it. Now, I’m not comparing pregnancy with chemo, especially since I never had morning sickness, but I do understand the perception of the change in self. Don’t underestimate your children. If chemo is your best shot, go get a photo done with each of them before your hair goes and let them draw new eyebrows back in with a sharpie. Let them be a part of your transformation. They might be taken aback by your new look but kids adjust to just about anything that we give them the right reason to adjust to. You know them best, I’m just throwing this out there that if this month is as hard as Hans intimates, you’ve given those girls special access into fighting with you. And I guarantee you that right now and in the future, what they want and need, is to know they helped you fight as hard as you could fight. Thinking warm thoughts for you and Bug-eyed Tart. If Dena doesn’t have time to knit, I could get my mom to make him a little butt cover so he’s a little more presentable in the lab ;-)

    • Chris

      A wonderful story, Meg. And some good advice. Thanks.

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