Where to start? How about status: Maggie is in good spirits. Maggie’s pain in her shoulder has mostly subsided but the swelling remains. We’ve developed a bonus pain in her bicep that seems to be growing in intensity but at this time we don’t know if it’s just some phantom pain or worse. We’ll know soon enough. She’s switched to oxycodone to manage the discomfort and is finishing off her last few steroid pills today. Dr. Loukas says she can’t have any more steroids otherwise we’ll have worse problems when she stops taking them. Instead, if the pain continues, we’ll begin targeted radiation treatments as and where necessary. And now, the rest of the story…..
Saturday Maggie spent the majority of the day preparing for her trial. That evening we had a wonderful supper with Brooke, Lori and Leslee, who brought over enough meat to feed San Marcos. It was a fine distraction. I had intended to slip out to Plucker’s for comfort food but didn’t, and was rewarded with bbq duties. And meat.
On Sunday, however, she took a turn for the worse. She had a client meeting and other preparations for the trial but her pain was really bothersome. So we did as has been done before – we applied Vicodin. But, for some reason, we, Vicodin and the stomach didn’t agree on the plan. Up came the pizza. Afterwards, Maggie was feeling flat out horrible. She spent the trip home in the car curled up in a ball with stomach, back and neck pains. We’ve decided that the stomach pain was merely a function of the Vicodin; that the back pain was a function of stress; and that the neck pain, well, we still aren’t sure.
Thankfully, Nurse Jolie was available to come over and assess the situation. She agreed that hospitalization wasn’t necessary, although I was secretly holding off on the final decision. It’s really tough to watch Maggie suffer and I would have cut off my big toe and sucked on it were I to think it’d help. But, on Nurse Jolie’s suggestion, we tried an experiment. As an alternative to removing my big toe, Maggie took oxicodone. Fortunately, after some time passed, Maggie’s condition improved markedly. While part of my foot rejoiced, this whole week-long trial thing, well, that storm was still a-brewing.
After watching my suffering wife claim to be “just fine and perfectly capable of holding a week-long trial,” I absolutely insisted that she bow out. Our discussion was unpleasant and she is still upset with me. Understandably, my sweet wife feels strongly that her clients are depending on her and she, only she, can adequately ensure their interests are served. However, after MUCH discussion, she agreed to brief Florencia and Martha about the case so that they could take over. So, last night, while I ate hot wings at Plucker’s with Kyle, drank beer and cried, she dumped it all on them. But, alas, it’s just not as easy as you’d hope.
The (Court) Trial
This morning we both got up and prepared for trial. It started at 9:30AM and I, like I did at Baylor, accepted the role of pack mule (or ass, if you’d prefer.) In her court attire and wig, Maggie performed absolutely wonderfully. I smiled inside and outside while I watched her work. I could not have been more proud. She was up against another lawyer who was being dastardly but she stood her ground and argued her points with presence and grace with sparkles of eloquence (unless, of course, she was trying to do otherwise.) It was a wonderful thing for me to witness. And this was all before the trial even started.*
* If you’ve not been to a trial before (and I hadn’t), apparently most of the good stuff happens before the trial, outside on the benches or in the elevator. You really should go to your local courthouse and spend a day observing. It’s educational and, in my humble opinion, facinating. This process is one of the cornerstones of our society. The better you understand it, the more appropriate voting decisions you’ll make. If you think about it, it’s really your responsibility as a U.S. citizen to understand how the system works, at least basically.
The trial itself, however, was delayed for a week for the opposing attorney to better prepare. He had some lame excuse about his heart faltering. Frankly, I could care less. The amount of wasted time and stress he caused us (and the other people involved) just ticks me off. But I digress. However, before the next trial (which Maggie will not be participating in, she promises) the judge has ordered the parties to mediation starting tomorrow. For better or worse, Maggie will be helping with that. At 9AM.
The (Clinical) Trials
While Maggie tried to sleep on Sunday, Nurse Jolie helped me pour over 144 pages of clinical trial gobbledygook. Thank goodness she was here because I think that the folks that wrote all that stuff just make up words. We found about 10 that Maggie seems to qualify for but only two are in Texas. But here’s the rub. We don’t really know what to do with this data. A clinical trial is a clinical trial. How do we tell which would be best? It’s quite frustrating.
This afternoon I went up to The Spa to get some answers, specifically, what can we do _right_ _now_? Dr. Loukas wasn’t there but Nurse Sharon, seeing the seriousness and slight panic in my eyes, called him to relay my questions. Dr. Loukas explained that he’d already contacted San Antonio and sent over our records. He said to expect a call from them soon. Not an hour later, they called. The woman explained that we’d need to come to San Antonio for a consultation and that Maggie would only qualify for Phase I trials since we’d already been through everything proven to work. The earliest they could get us in was on Tuesday, Oct 28, more than a week away. Yikes.
What’s a Phase I trial, you ask? Here are the details. (Skip to the next paragraph for the Cliff’s Notes.) There are four different types of clinical trials, and all lead up to a drug being approved by the all-powerful FDA. The trials are appropriately named Phase I, Phase, II, Phase III and Phase IV, and each phase has a different goal. Phase IV trials are the final, large-scale test of a drug’s ok-ness. Phase III trials are used when they’ve established that the drug is effective but want to compare to current treatments to see if this new one is better. Phase II trials are to prove effectiveness and Phase I trials are simply to see if the drug is actually safe for humans (see nifty Phase I graphic.)
In other words:
Phase I – “Is it reasonably safe?”
Phase II – “Does it work?”
Phase III – “Does it work better than what we’ve got?”
Phase IV – “Are there any surprises we didn’t find in the other tests?”
Here’s a visual overview.)
So, as it stands right now, we are on the schedule for Oct 28 in San Antonio for a consultation. Maggie and I both agree that a week is a really long time to wait while the cancer is just free to go on spreading. Neither of us are comfortable with that.
I’ll be visiting with Dr. Loukas tomorrow somehow to tell him about the appointment and ask what we can do to find something to start sooner. I suspect I’ll just have to drop in again, like today.
I wish I had the answer to the question “what’s the best choice of action?” I feel very leaf-on-a-stream-y.
At least Maggie got to participate today in her trial, despite it being reset for a later date. I think she’s happy. And, as long as a clinical trial doesn’t drop in our lap and we keep her discomfort in check, the mediation tomorrow will be rewarding for her and make her happy. And that makes me happy. In sticking with the leaf analogy, she’s like a happy bug eating a piece of fruit sitting on the leaf as it floats down the stream while I try to paddle and steer the leaf with a toothpick.
I’ve looked into stage IV CRC clinical trials, registered the see if anything fit (See Link) and attended a lecture on what to expect.
I came to appreciate that clinical trial patients are very special people. I hope you guys find a comforting and responsive clinical trial.
http://www.dana-farber.org/res/clinical/default.html
Hold Fast & Best Wishes
Don MacLeod
I have to say Chris, you have a way of making me grin through these tough times with your touch of light heartedness in your posts (“while I try to paddle and steer the leaf with a toothpick”). Thank you both again for having us over on Saturday night and doing such a great job on the steaks Chris (now I WISH I had taken some home). I’m glad you didn’t run off to Plucker’s and stayed and had dinner with us. It was good to spend time with you both and know that I’m sending you positive, happy, and ‘hopeful for a kick-ass clinical trial’ thoughts all day long! Hugs and I hope you both get a good night’s rest. XOXOXO
Chris:
Try calling Dr. Curley, he will know of any trials at MD Anderson that are upcoming. Use all the resources at your disposal. As a study coordinator for over 25 years I would be happy to talk to you. When you enter a trial you may want to ask if you will be eligible to enter the Phase II trial if it is successful. Trial coordinators are usually very empathetic and great sources of info. Just ask away and they should be happy to answer. Best of luck
I have to agree with what Brooke said about your writing talent, Chris.
I am soaking up the medical knowledge you provide (clinical trials, medications, etc.) because I’m pursuing a nursing degree. Thanks for that!
I’ve found that, in spite of not having met you and Maggie, my heart and soul continue to be touched as I follow along. Your writing skills facilitate that in me.
This I would say to my closest friends and family…and I will also say to you, Maggie and Chris…
“Please, don’t wait until you’re at the very bottom before looking UP to find God. He’s right there waiting for you to reach for Him.”
Prayers and hugs for you both,
Shawna
Hi Maggie and Chris,
I am Karen Bradford’s aunt. I believe we met briefly at Karen and Justin’s wedding. She has kept us up to date on you and we have been praying for you. We will continue to keep you in our thoughts and prayers! Sending you good thoughts from Virginia!
Maureen
When I was diagnosed with Stage IV cc and not given any hope, I found the right clinical trial for me and the right docs for me. I have been NED since Sept of ’04. The docs have let it slip that they think I’m cured.
Yea.
I clinical trial saved my life and it has been quite successful for others. I wish you the best and will keep you in my heart and prayers.
I do wonder, why are you only looking for a trial in Texas. I traveled 16 hours round trip for my clinical trials. What I found out after I went through all that expense is, there are free flights and free places to stay, if cost is an issue.
I wish I had known about these when I was going though treatment, it would have helped me financially.
My thoughts and prayers are with you; and you have a place to crash if you find one in the LA area!
Sending thoughts and prayers your way, as always.
Maggie told me about this blog just today. Wow! Thank you, Maggie, for allowing us to help you practice law. Even though we have worked with you for just a month or two, you have touched our hearts.
Vicodin does a number on my stomach too. I personally prefer Percocet–it rocks! Maggie, I sure would’ve loved to see you in action in Court. I’m sure you can stand up to the best of ’em.