Saturday, August 2, 2008

A Long Overdue Update

Hi! First, I'll start with good news: yesterday I met with Dr. Malkin, my neuro-oncologist, to review my latest brain MRI scan. Once again, the scan shows no evidence of active disease in my brain. This is a minor miracle in my estimation. As I near the one-year anniversary of my craniotomy and gamma knife procedure, I feel tremendous gratitude toward all of my neurologists and oncologists for the care they have provided to me during the past 12 months.

Second, I have to apologize for not posting a blog during the past three weeks or so. I've had the best of intentions, but somehow it seems like each day gets away from me and before I know it I'm laying in bed trying to remember what if anything I accomplished that day. The blog is not the only thing that has suffered. I've been lax on my email replies, on letters and cards I need to send, on phone calls I owe to other people. Don't even ask about my to-do list.

What's kept me so busy? Well, my excuses come down to three things: nausea, pain, and fatigue. The nausea has been mild, fortunately, and most of the time I do not feel sick. The trick, I've discovered, is to make sure my stomach is never too empty nor too full. It also helps if I eat slowly. So I might spend 90 minutes eating a bowl of cereal, a couple of hours putting down two pieces of french toast, and a good hour to snack on half an apple and 4 oz. of 7-Up.

The pain, on the other hand, has been quite unpleasant. It strikes in two ways: either as a sharp nerve-related pain, most likely caused by abdominal or liver lesions pressing against the set of nerves that run through the middle of the body; or as a deep ache around the middle of my torso, between the ribs and hips, that leaves me feeling like I've been pummelled by Rocky Balboa. I don't know whether the pain is a good thing--is it caused by the necrosis (death) of cancer cells?--or a bad thing--is it caused by the growth of the cancer? But I do know it has knocked me to the sideline on more than one occasion this past month, and I wish it would go away.

My third excuse, fatigue, is probably caused by my ipilimumab treatment and the preponderance of narcotic pain medications I've been taking. In an effort to alleviate the fatigue and minimize the pain, I will be meeting this coming week with a palliative care consultant. The consultant is associated with Froedtert Hospital's new cancer center (Froedtert, for those who don't remember, is where I had my craniotomy). Palliative care focuses on symptom management. Hopefully, the consultant will be able to look at my symptoms--the nausea, pain, and fatigue--and recommend a more effective way of treating them that won't interfere with my clinical trial.

So that's why I haven't blogged lately. I promise to try to do better.

But enough about me. Let's get down to the good stuff: what's happening with Kelly and the kids! Kelly started her new job July 1. She loves it, and I'm so proud of her for what she's accomplished. She's had to spend a lot of time this past month meeting her new colleagues, settling into a new office, learning new software systems (e.g. for billing and scheduling), figuring out how a Blackberry works, making sure prospective and current clients know her new contact information, and doing all those other tasks that a person must do when starting a new job.

On top of that, Kelly's band has been quite busy this summer, playing everything from private retirement parties and wedding receptions to hometown 4th of July celebrations and even Summerfest ( That's good from the band's perspective. Unfortunately, many of these shows take place in small towns throughout Wisconsin and Illinois, requiring Kelly to drive 45 minutes or more to get to the venue and then another 45 minutes or more to get home again. And they're usually night shows that start at 8:30 or 9:00 p.m. and go until 1:30 or 2:00 a.m. Kelly loves the singing and performing, but the only thing she wants to do--and it's what she also needs to do--is sleep, sleep, sleep for the next day or two following a show. Of course, that's never gonna happen. She's always joking with me that her life on the weekends is one of simple choices: should I eat or shower? should I shower or sleep? But no matter how busy she is, somehow she manages to spend quality time with me and the kids every day. I don't know how she does it all, but I think it proves just how amazing she is!

The kids have finished up their organized summer activities (e.g. t-ball, swimming lessons, the city library's summer reading program), so now they have more time to act as my domestic servants. That may sound like a joke, but it's not. Aubrey, Regan, and Jack help me constantly. They gather and sort laundry; water plants indoors and out; wash, dress, change, help feed, and babysit Finn; take out the trash and roll the big cans to the curb for pickup; undertake minor gardening and home maintenance tasks that I can't do; help shop for groceries; and the list goes on. I also try to give them time and opportunities to play with their friends so that they can enjoy their summer vacations a little bit. : ) In my defense, I think they would say they're having a good summer if you were to ask them.

Well, that's all for now. I promise to write more later.


Kara Smith said...

Thank you so much for the update. I am glad for the lack of activity in your brain! OK, that wasn't nice. Hope it gave you a small smile anyway! I am praying that you find relief from your pain. You are an amazing man! Keep fighting!
Kara Smith

Mary M Clay said...

Thanks for the blog, Jeff!

Congrats on the good report from the neurologist! You have been working hard over the last year to earn this report, and I am proud of you!
I hope the negative side effects subside soon.
I love you,

Johnny said...

things sound positive...and you are giving me hope. I start ipi tomorrow. I have not read through the entire blog yet so I would like to know if the side effects are from the ipi trial or other dugs/tumor growth.
I have to make sure my freinds dont see the lack of brain activity thing...I am still clear in the brain so does that make mine completly inactive? makes you strong!