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Home » My Health Updates » A surprise CT scan AND a surprise uterus

A surprise CT scan AND a surprise uterus

Posted by on March 16, 2012 in My Health Updates - 16 Comments

I went into our meeting with Dr. Hammers yesterday fully confident and prepared.  I had e-mailed him a series of questions prior to the appointment.  I had my fancy fountain pen that makes me feel more important and scholarly when I write with it. I had done my Google research. I even wore my extra smart bra (it lifts and separates).  But, once again, within minutes of walking into the office I found myself stuttering and stammering – woefully unprepared.

“You want to do what?  You want to do a pop CT scan? There was no talk of a CT scan. Talk is needed for this kind of thing. Advance talk. I’m a talker.  I’m not ready!”

One doesn’t just walk in and undergo a surprise CT scan. There’s a lot of Zen mental preparation required. And Ativan.

Hans seemed either mildly amused that he’d caught me off guard again, genuinely surprised that I hadn’t seen it coming, or afraid for his physical safety after my eyeballs rolled back in my head.  “Well, we don’t have to do a scan – I just thought that based on the e-mails we exchanged based on the previous progression on Sutent that you and Chris were ready to explore new options. A scan will confirm that there is more progression and whether we should change treatments.”

Chris asked Hans whether he thought we should do the CT scan and consider a new treatment regimen – as if my medical expertise weren’t enough – and Hans said, yes. Chris gave me a look that said, “stop whining,” so we – and by we I mean I – agreed to the CT scan.  I did, however, let Hans know that there is an element of emotional preparation that’s needed for a scan – and springing it on patients and their caregivers is frowned upon in the patient world and has, on occasion, resulted in violence.

After we decided on the scan, we began a lengthy discussion about what we might if the they once again showed progression.  I started throwing out drug names like a jeopardy contestant:  ”What is pazopanib for $500!” Chris just looked at me annoyed – asking if we could use the real names (meaning the brand names) rather than the actual drug names.  I condescendingly agreed.  (He also makes me call acetaminophen “Tylenol,” soda pop “Coke” and our biological offspring “daughters.”)

Truth be told, after all the discussions on various drug options, explorations of clinical trials, and, of course, witty repartee, we came to the following conclusion: Who the hell knows? There is no obvious next best step. That’s the problem with kidney cancer treatments – nobody knows why some work and others don’t. After a couple of options, it’s all really a roll of the dice.

That said, we do have other options – and we know how to pronounce them in fancy medical terms.  We’re considering a clinical trial at the National Cancer Institute in Bethesda, another clinical trial at Lombardi Comprehensive Cancer Center in Georgetown or sticking with Hopkins and trying another FDA-approved drug – which I call axitinib and Chris calls Inlyta. (Or Tylenol.)

But just when I felt like I was back on my game, fully recovered from the pop CT quiz, I was thrown for a new loop when we got the scan report.  The actual cancer results were exactly what we expected, considering we’d just done a scan a month ago: modest progression in the lungs again and stable disease in the lymph nodes.  The liver was normal, the spleen was normal, and the uterus was grossly normal.

Uh – what??  I’m sorry, what??  Chris has a uterus?  And it’s not just normal but grossly normal?

Hans took it in stride, even offering up a little irony, suggesting, “Let’s wait and see if they catch the mistake on the final report.” If not, he said, we can frame it next to the previous scan report falsely proclaiming Chris’s cirrhosis of the liver. Seems that while our oncologist is trying save Chris’s life, the radiologists are trying to kill him. Or grossly mutate him.

Chris is a little overwrought about his new-found uterus, noting that if he were to get pregnant he would be excluded from both of the clinical trials we’re considering. So he’s gone an abstinence kick.

In the meantime, we’re going to take a week or so to call around and investigate some of these trials and figure out next steps.  We’re seriously considering the NCI trial – which is a combination of a drug called Votrient and another one with a name even I can’t remember. It contains a lot of random letters and numbers. R2D2 or something like that. Another trial we like is called FANG. No idea what the acronym stands for, and it doesn’t really look right for us. But, seriously, who can pass up a trial called FANG? Are their venomous snakes involved? Vampires? Who knows, but it sounds exciting.

Thankfully, we’ve been doing research all along, knowing that we might need to make a change; so we’re prepared in terms of having looked at a number of options.  And we have a medical team that makes us feel a lot more confident with whatever comes next. So we’ll figure it out.

And with that, I need to run.  I’m off to the pharmacy to buy Chris some midol and cookie dough.

  • Rpatter059

    A combination of torisel and sutent kept Jim stable for 18 months. It is still a trial at MDA but when we were kicked off we continued on. Our insurance paid for the weekly infusion and our drug insurance picked up the sutent cost. We’re now on sutent. I noticed at Bethesda they are doing a trial with a siblings stem cells. I would love to know more about that one! I hate this quest! Jim is even willing to IL-2 again if they would let him! Stay in touch!

    Blessings!
    Rebecca Patterson
    http://Www.caringbridge.org/visit/jimpatterson

    • Dena Battle

      Rebecca — we looked into the stem cell trial at Bethesda — but you need a sibling match and neither of Chris’s brothers were a match.  I will get you the contact information for Dr. Childs who runs the trial (he’s amazing!) — they will do the blood matching for free.

  • Mary Pattison

    And life goes on. Heard you were shopping with Mom yesterday for her birthday. Will pray with you for guidance in making the next choice. You are both remarkable!!!

  • Pete Hoover

    Gosh, Dena….now you’re  going to have to deal with Chris’ PMS on top of everything else.  When Midol fails, give him a shot of Old Grand Dad and a heating pad.

  • Jill Geer

    So what did they have to say about Dena’s grossly surprising testicles? :) . Much love to you guys.

  • Klarkin

    Don’t forget tampons. Love you guys! I will be praying.

  • Dona Creson

    Wow! Maybe all those drugs they give out men to kill the cancer makes them grow uteri! Now if we can get them to grow a baby we’ll be famous and rich!! Sending positive thoughts and prayers for the Battle’s to pick their next weapon and hope it works. We have scans tomorrow to see if the cobra poison aka HDIl-2 is working so we can have the 3rd round starting Monday. We are very nervous but are pre-meding with xanax for Danny and whiskey for me.
    Dona Creson

    • Chris Battle

      We’ve been following your story on Caringbridge, and hoping the scans come back with good news.

  • Beccisaporito

    As always, much love and prayers sent your way…Becci Saporito

  • Leighann

    I always knew Chris was insanely in tune with his feminine side. Now we know why! Why can’t my husband have a uterus too? Dena you are soooooo lucky!

  • Bobbejo46

    Praying that you’ll find the right treatment…I know it’s waiting for you!!!

  • Pam_lacy

    Man! Thank God you two are on the ball! I’m amazed at all you’ve been through and happy to see that you are fighting this deadly disease “head on”. You’ve managed to take a depressing subject and make it funny. I love reading your posts! Pamela Lacy ~ In loving memory of my younger brother Paul Lacy who passed away on 9/19/2011 after battling kidney cancer for 363 days…..

  • Jplantin

    Scary how these ct scans get read. On one scan it was reported that my gallbladder was unremarkable. Only problem is that my gallbladdet was removed.8 years ago. Maybe we don’t even have cancer. Oops, our mistake.
    Janet
    KC fighter

  • Kelly A Neary

    Wow, this is a weird paradox, Dena. I am cracking up, but so disturbed at the same time. You have such a gift (really you both do) for transforming this horrible crappy disease and the idiots that screw up into some entertaining hilarity ~ and I, for one, am very grateful to you both for this. I had a crappy day with cancer issues and it is nice to know you’re both there and still able to laugh (making others laugh). Bless you both, my dear friend. 

  • Phillip DeKemper

    Chris & Dena

    I have been reading your blogs here and the old one at CaringBridge.  I truly laugh and cry throughout them.  You are both incredible writers.

    I am going through the same battle.  In fact, many of your stories I could just substitute my name and it was the same experience.  I just finished my second round of Sutent and my scans showed significant reduction in all my tumors and no new ones.  So I am hoping for a good run on it.  I also went through IL-2 last November and it did not work for me.

    I am a little older than Chris (I am 49) and also have two children (two boys, age 21 and 20).  My wife is also amazing and plays such a huge role in my fight also.  Mara also is in a very unique position.  Her brother died from RCC in 2000.  She may be the only person in the world with  both a husband and brother with RCC.

    I am really inspired by you guys and your great attitude.

    Phil

    ps.  if you are interested, I keep a blog also
    http://www.carepages.com/carepages/PhillipDeKemper
    If you are open to it, I would love to talk by phone or email sometime. 

    • Dena Battle

      Phil – thanks for following our blog!  I just left on message on your carepage as well.  Chris and I would be happy to talk anytime.  The best way to reach us is through my e-mail: dena_battle@yahoo.com.  Glad to hear that the sutent is working, we’ll also pray for a good long run ;) .  All the best — Dena

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