Saturday, January 19, 2008

Three Down, One To Go

Hi! I had my third antiCTLA-4 treatment yesterday in Chicago. While there, I met with one of Dr. Richards' colleagues prior to my treatment. I received some discouraging news and some encouraging news, but overall I feel positive about how things went.
The first thing I do when I get to the clinic for my treatments is weigh in. The pharmacists cannot mix and deliver the Ipilimumab until the nurses tell them how much I weigh. When I went in for my first treatment on Dec 7, I weighed 153 pounds. When I went in for my second treatment on Dec 28, I weighed 145 pounds. This was not surprising to me as I had felt quite miserable during the latter part of December and was not eating well. Since that second treatment, however, I have felt better and have been eating regularly. I had hoped to see a significant weight gain at this weigh-in, so I was surprised when the nurse said I weighed 141 pounds yesterday. That was one bit of discouraging news. The nurses said I need to substantially increase my calorie count. That may sound like an easy thing to do--and it probably would be if I was my normal pre-cancer self--but it's rather difficult when nothing sounds appetizing and you're constantly afraid of throwing up. Nevertheless, I promise to do my best. Bring on the whole milk and protein mixes!

Next, the doctors examined my subcutaneous nodes. I had to point out to them the half-dozen or so new ones that had appeared since my first treatment. That was the other discouraging part of the day. These nodes are relatively harmless and for the most part painless, but their presence is a constant reminder of what's going on inside my body, and I cuss silently to myself every time I find a new one. I felt particularly discouraged about a node that I found just last week. It's at the top of my right hamstring, near the hip. It's deep inside the muscle (which is probably why I didn't notice it until recently) and it feels like it's about the size of a small egg. To discover such a sizeable tumor when I was nearly six weeks into this latest treatment cycle really had me feeling the blues most of this past week.

(NOTE: I thought maybe I should explain what a subcutaneous node is. It is a melanoma tumor that exists just below the surface of the skin. Some burrow into muscle, others seem to rest on top of muscle or bone. I have posted pictures of two subcutaneous nodes. The first is on my right clavicle; you can see the bone stretch out in a line to the left. The second is on my left side. It's a bit out of focus, but you can see how it bulges under the skin. You also will notice that there is nothing special about subcutaneous nodes. They're just lumps under the skin. The only reason the doctors get excited about them is if they start turning red, which means they are approaching the surface and could become open lesions, or if they impair mobility or functionality. Anyway, that's just some info in case you were wondering. Now where was I?)

I mentioned that I had encouraging news, however, so let's get down to it. The first bit of good news is that my blood test results showed that my LDH level, which measures the health of the liver and is considered to be an especially important marker for melanoma activity, had gone down. A normal LDH level is less than 190. Mine had been at 245 in November, but has gone down to 217. The nurses said many factors can influence the LDH level, but a downward trend is generally a good sign. Another bit of encouraging news is that all but one of my pre-existing subcutaneous nodes--i.e. the seven or so that I had when I went in for my first antiCTLA-4 treatment and that were measured by the doctor in November--have decreased in size. The doctor and nurses seemed quite pleased with the declining LDH level and the shrinking subcutaneous nodes. They also felt encouraged by the fact that I have been feeling better. All in all, I came away with a good feeling about how things are going and hopeful that the treatments may yet fulfill their promise.

My old friend, Dustin Bailey, accompanied me to Chicago for my treatments. He flew in from Lincoln on Thursday and flew back home today (Saturday). He was a great companion, and we celebrated the successful infusion by hitting Booby's on our way home. That sounds much worse than it really is. Booby's is actually a cafe located about a block away from where I get my treatments in Chicago. The oncology nurses recommended we try the Booby Burger, which consists of a burger covered in cole slaw, pickles, onions, and BBQ sauce. I had to pass on that one, but Dustin put it down with gusto! For those who might be concerned, everyone in the restaurant was fully clothed and the name of the joint is evidently a nickname of the owner, who happens to be a man. We didn't bother to ask for an explanation about that.

The fact that Dustin would come see me really means a lot, and it makes me think about something that happened long ago. When I was in Boy Scouts, I became friends with a boy named Steve Goodwater. It's no wonder I liked him right away. He was athletic and smart, alwasy ready to help build a campfire or raise a tent, had a good sense of humor, and was ready to stomp off into the woods to look for adventure whenever we got the urge to find it. I knew Steve for several years and shared a tent with him on countless campouts. I wasn't his best friend--we went to different schools and he was a grade ahead of me--but he was one of the reasons I always looked forward to our next troop meeting or campout.

Several years into our friendship, our troop leaders decided to give us a treat and took us all to the mall to watch a movie. I still remember that night. We saw "The Right Stuff." I also remember that I sat in the front row because Steve's back was hurting--which had become a frequent complaint from him--and he wanted to lay on the floor rather than sit in a chair. That was okay by me. I had never sat in the front row of a theater before and thought it would be fun. After the movie ended, we said good bye and went our separate ways.

That was the last time I saw Steve.

A few days later, I received a call from Annette, the mom of another Boy Scout comrade. She told me that Steve had gone to the hospital a few hours after we finished our movie. He couldn't sleep that night and was in great pain. They ran some initial x-rays and had discovered several "growths" as she called them. She said they didn't know much else at that point, but that we should keep Steve in our prayers. This took me by shock, of course, and I remember wondering what she meant when she said "growths." To my naive 14-year-old mind, it couldn't be too bad if it was just a "growth." Unfortunately, the situation became much clearer when she called back. I remember her words almost verbatim: "Jeff, this is Dave's mom, Annette. They determined that Steve has cancer. In his neck, back, lungs, and legs."

Steve died several months later. It is one of the chief regrets of my life--and I have only a couple--that I never went to visit him. I'm sure if I had asked my parents to take me, they would have. But I never asked. I don't know exactly why. I suppose it really doesn't matter.

The reason this story comes to mind is that it stands in such sharp contrast to the recent actions of some of my friends. I only had to travel a couple of miles to see Steve and was too--I don't know: lazy? afraid?--to do it. But I have friends like Dustin who flies 600 miles to see me in Milwaukee--or Marc Schulte and Tony Popanz who both flew cross-country to visit me in Houston, or Katie Clancy and my uncle Tom who trekked in from the Wild West to see me in the neuro ward after my craniotomy, or Brendan and Meaghen Gardiner who drove six hours round trip to visit with me for two hours at a Chicago fundraiser. This story puts their actions in perspective and enables me to fully appreciate the extent of their efforts. I truly cannot thank them enough.



Mary M Clay said...


Thanks for the update and congrats on the LDH levels and shrinking nodes! Thank you also for the overview of subcutaneous's helpful in understanding melanoma and cancer in general. Steve Goodwater has left quite a legacy. You were a good friend to him way back then, and are still a good friend, Jeff, in mentioning him to all of your blog readers. I agree that your friends are amazing. Having Brendan, Meaghan and Wendy Metz at the fundraiser (along with all of the other friends and family members) definitely demonstrated how much you mean to them. You are a great friend (and brother!) in return. I love you and keep fighting, Jeff! More positive results lie ahead!

gardiner said...

Hi Jeff and Kelly and family, We think of you often and read your blog regularly. Your writing as always is inspiring and beautiful not to mention fun and entertaining! We are happy to hear your good news. You keep up this fight!!! Our love & prayers,
Meaghen & Brendan p.s. LOVE the story of Jeff's deviant behavior all in the name of love :)

Patrick and Tracy said...

Thanks for the updates. We always check the blog wherever we are and even though we don't comment as much as we should, we always appreciate being kept up-to-date. We are in Christchurch, New Zealand today. It is a beautiful New Zealand day - about 65 degrees, slight overcast, but sunny, and lots of poached eggs and coffee to be had. New Zealand really is very "Lord of the Rings" ish. I can see why they chose to film over here (of course, Peter Jackson's from here, so he knew it was beautiful). It's nice to have the different climates between Australia's extreme hot weather and New Zealands mild summer weather.
Thanks again for the updates Jeff. We are always keeping you and Kelly and the kids in our thoughts and prayers. Glad the treatments seem to be doing their jobs.
Love, Patrick and Tracy

Ann R said...

Jeff and Family,
You have been a busy guy glad that along with the not so good news there was better news I am glad you focus is so postive you are a champ. You do seem to have some great friends and family which I am sure have been a great support for you, but Jeff you give us all more then other's can give you in live lessons. You hang in there and my prayers are with you all.
Ann Reins (Tracy Mom)

colin said...

Dang! I knew we should have stopped at Booby's in December. Do they make a Double Booby Burger?